That's one thing I've learned though this. Remember that whole "If you can't say something nice, don't say anything"? B.S., at least in this situation.
I know that in the past, I've been guilty of worrying that I was going to say something dumbass to someone going through a rough time.
But you know what? Silence hurts far more than anything stupid you can say.
I've been lucky. All the people that I'm really close to have been next to me since the second we were called to go to the ER with Little Warrior. I am blessed; I am rich in my friends.
But I will admit, there have been a few that have surprised me -- friends who I would have predicted would at least be dropping an email. Total silence.
I'm sure it's the whole "I wouldn't know what to say." But you can say that. In fact, the best thing I heard was when she was first diagnosed and my good friend MouseFace called and said, "I don't what to say except that this really sucks."
She summed up my feelings exactly.
Wednesday, March 22, 2006
If You Throw a Pity Party ...
...make sure you have plenty of food and drink.
That was the advice I gave a friend today who is going through a rough patch. And I have another friend, Anne, who hit a low on Monday and is feeling a bit blue.
Before All of This, I LOVED throwing parties. I am a bit famous for them, actually. Or infamous, I guess. You know the party scene in "Breakfast at Tiffany's"? That's always been my goal. But with more food, because I am a cook and a foodie.
Well, four kids later, our parties are similar to the scene, if you threw in about 1.5 children for every adult couple. Lots of sinful food, and a few non-sinful items for my vegan friends. Someone on the back deck playing guitar, kids up in the playroom wreaking havoc, pockets of great conversation all over, food and drink everywhere. And by about 9:30 pm, me somewhere teaching everyone how to do chocolate cake shots.
So, why should a pity party be any different? Of course, there's no need for guests, this is a party for one.
Necessary items for a pity party:
a) Dress: dress is beyond casual. Only the most comfy jammies will do. Barring that, then super soft sweats, or faded, loose shorts and a big tshirt.
b) Food: first, there must be something salty. And something sweet. Something creamy. Something crunchy. There we go, your four food groups. The sweet should, of course, be chocolate. Or, you can have chocolate as an adjunct, and have something else filling the sweet role.
c) Drink: A really good red wine. Or a dark beer, the better to go with chocolate. Now that I think about it, in college, some friends and I (after much testing) decided that the perfect snack was dutch chocolate ice cream, bavarian style pretzels and Shiner Bock. Ooh, looka that. Salty, sweet, creamy, crunchy and chocolate in only 3 items. Wait, how did I get back on food?
If one is not allowed to drink alcohol because a) it interferes with the anti-depressants, b) because it interferes with chemo, c) it comes through breastmilk and interferes with your baby's chemo or d) the court-mandated breathalyzer test you must take every hour, then one should drink either a) an egg cream, b) a real non-diet Coke or c) a bottle of non-alcoholic sparkling cider.
d) Entertainment: There are two schools of thought on this. One avenue to explore is that of really depressing movies. Sob along with Steel Magnolias, Beaches, Terms of Endearment, etc.
The other school of thought says who wants more tears? Rent something either really funny or really bad, or a combination of the two.
Happy Festivities!
That was the advice I gave a friend today who is going through a rough patch. And I have another friend, Anne, who hit a low on Monday and is feeling a bit blue.
Before All of This, I LOVED throwing parties. I am a bit famous for them, actually. Or infamous, I guess. You know the party scene in "Breakfast at Tiffany's"? That's always been my goal. But with more food, because I am a cook and a foodie.
Well, four kids later, our parties are similar to the scene, if you threw in about 1.5 children for every adult couple. Lots of sinful food, and a few non-sinful items for my vegan friends. Someone on the back deck playing guitar, kids up in the playroom wreaking havoc, pockets of great conversation all over, food and drink everywhere. And by about 9:30 pm, me somewhere teaching everyone how to do chocolate cake shots.
So, why should a pity party be any different? Of course, there's no need for guests, this is a party for one.
Necessary items for a pity party:
a) Dress: dress is beyond casual. Only the most comfy jammies will do. Barring that, then super soft sweats, or faded, loose shorts and a big tshirt.
b) Food: first, there must be something salty. And something sweet. Something creamy. Something crunchy. There we go, your four food groups. The sweet should, of course, be chocolate. Or, you can have chocolate as an adjunct, and have something else filling the sweet role.
c) Drink: A really good red wine. Or a dark beer, the better to go with chocolate. Now that I think about it, in college, some friends and I (after much testing) decided that the perfect snack was dutch chocolate ice cream, bavarian style pretzels and Shiner Bock. Ooh, looka that. Salty, sweet, creamy, crunchy and chocolate in only 3 items. Wait, how did I get back on food?
If one is not allowed to drink alcohol because a) it interferes with the anti-depressants, b) because it interferes with chemo, c) it comes through breastmilk and interferes with your baby's chemo or d) the court-mandated breathalyzer test you must take every hour, then one should drink either a) an egg cream, b) a real non-diet Coke or c) a bottle of non-alcoholic sparkling cider.
d) Entertainment: There are two schools of thought on this. One avenue to explore is that of really depressing movies. Sob along with Steel Magnolias, Beaches, Terms of Endearment, etc.
The other school of thought says who wants more tears? Rent something either really funny or really bad, or a combination of the two.
Happy Festivities!
Tuesday, March 21, 2006
Will the real superstition please stand up?
Times like this, you get real superstitious. I've knocked wood so many times, we got a letter from our neighborhood association instructing us to take care of our woodpecker problem.
Coupled with this is the fact that I don't know the rules of that many superstitions. Something about tossing salt over your shoulder. Or not looking at a full moon through the trees unless its over your left shoulder. So, I just go through my day, randomly tossing salt, hitting wood or a wood by-product, and twitching around to look at things backward. My neighbors think I either have epilepsy or full-body Tourettes.
The bigger issue is when you're not sure which way to go with superstition. Superstition-wise, leaving any possible logic out of it, does one talk about all eventualities, in the belief that if you talk about it, you ward it off? Kind of like buying tons of life insurance to guard against your death. Or should one not mention any negative outcomes, in order to not "open the door" to the possibility?
I vaguely remember a friend's Catholic Italian grandmother spitting when certain things were said. But I don't remember what kinds of things.
Oh great. Salt, wood, turn around and spit. Now my neighbors are sure to call the guys with the butterfly nets.
Coupled with this is the fact that I don't know the rules of that many superstitions. Something about tossing salt over your shoulder. Or not looking at a full moon through the trees unless its over your left shoulder. So, I just go through my day, randomly tossing salt, hitting wood or a wood by-product, and twitching around to look at things backward. My neighbors think I either have epilepsy or full-body Tourettes.
The bigger issue is when you're not sure which way to go with superstition. Superstition-wise, leaving any possible logic out of it, does one talk about all eventualities, in the belief that if you talk about it, you ward it off? Kind of like buying tons of life insurance to guard against your death. Or should one not mention any negative outcomes, in order to not "open the door" to the possibility?
I vaguely remember a friend's Catholic Italian grandmother spitting when certain things were said. But I don't remember what kinds of things.
Oh great. Salt, wood, turn around and spit. Now my neighbors are sure to call the guys with the butterfly nets.
Monday, March 20, 2006
Obladi, Oblada 2
Early morning can be just as bad as night ... maybe worse, because you have no control. You wake up with a thought in your head that you dreamed or that is continuing from the night before.
This a.m. "If the worst happens, I need to get a copy of 'The Little Prince' for the service, because my copy is in French."
Ugh.
That was followed by loud barking and little girl screams, as Bo Peep and the Princess came down the stairs, startling the dog, who was in the house because it's raining, who began barking, startling the girls and making them scream and cry. That lives in the house that Jack built.
They came and got in bed with Little Warrior and myself. So, there I am, Little Warrior on my left, Bo Peep curled up on my right arm, the Princess lying slap in the middle of me. So I was vividly reminded that I am not just the mother of one.
The morning has begun, Teletubbies and Cookie Crisp (I miss being able to do the grocery shopping). It's raining outside, which I love.
Obladi, Oblada, Life Goes On ...
This a.m. "If the worst happens, I need to get a copy of 'The Little Prince' for the service, because my copy is in French."
Ugh.
That was followed by loud barking and little girl screams, as Bo Peep and the Princess came down the stairs, startling the dog, who was in the house because it's raining, who began barking, startling the girls and making them scream and cry. That lives in the house that Jack built.
They came and got in bed with Little Warrior and myself. So, there I am, Little Warrior on my left, Bo Peep curled up on my right arm, the Princess lying slap in the middle of me. So I was vividly reminded that I am not just the mother of one.
The morning has begun, Teletubbies and Cookie Crisp (I miss being able to do the grocery shopping). It's raining outside, which I love.
Obladi, Oblada, Life Goes On ...
Sunday, March 19, 2006
Reality is so much worse than my imagination
Tonight, we were watching "Cold Case" and The Husband noted, "I'm surprised you're watching this. You usually hate this kind of show." (Meaning: stressful, scary.)
Good ole escapism. Doesn't bother me a whit, now.
Before, shows like that were too much for me. With my crazy imagination, eek. I was scared of everything.
Now, I'm scared of one thing. And that's it.
Before, my imagination could pull up all kinds of dramatic, harrowing situations. A bump outside my window was the crazed murderer, coming to get us all.
Now, I am learning that little, seemingly insignificant things are far scarier, far more painful than the bogeyman my mind could conjure. A few minutes before my husband made his comment, I was stroking my baby daughter's cheek, her eyelids, her little lips, trying to memorize them. Wondering if I would soon be trying to remember what her skin feels like.
It's nighttime right now. Daytime, I am detached. I can think of such awful things, but in a very detached, unemotional way. If the worst happens, I think, what will we do for a minister for the service? (Our church is currently without). The two that I could call "mine" are unavailable; one is in the Northeast, and one is in Australia. I muse over options.
But at nighttime ... the guard is down. There is no detachment. I videotape Little Warrior playing with her siblings, making sure that I have each one videotaped holding her, making her laugh. I have to stop, my vision is blurry and the viewfinder is wet.
I wish I could take some sort of a sleeping pill, because when I lay down to go to sleep, that's when the worst of the demons arrive. My head swims with worry, with grief. Can't take a sleeping pill, can't even have a beer. Little Warrior is getting all of her nutrition from Mama and alcohol can interfere with chemo.
Please God, may next week's reality be so much better than my imagination.
Good ole escapism. Doesn't bother me a whit, now.
Before, shows like that were too much for me. With my crazy imagination, eek. I was scared of everything.
Now, I'm scared of one thing. And that's it.
Before, my imagination could pull up all kinds of dramatic, harrowing situations. A bump outside my window was the crazed murderer, coming to get us all.
Now, I am learning that little, seemingly insignificant things are far scarier, far more painful than the bogeyman my mind could conjure. A few minutes before my husband made his comment, I was stroking my baby daughter's cheek, her eyelids, her little lips, trying to memorize them. Wondering if I would soon be trying to remember what her skin feels like.
It's nighttime right now. Daytime, I am detached. I can think of such awful things, but in a very detached, unemotional way. If the worst happens, I think, what will we do for a minister for the service? (Our church is currently without). The two that I could call "mine" are unavailable; one is in the Northeast, and one is in Australia. I muse over options.
But at nighttime ... the guard is down. There is no detachment. I videotape Little Warrior playing with her siblings, making sure that I have each one videotaped holding her, making her laugh. I have to stop, my vision is blurry and the viewfinder is wet.
I wish I could take some sort of a sleeping pill, because when I lay down to go to sleep, that's when the worst of the demons arrive. My head swims with worry, with grief. Can't take a sleeping pill, can't even have a beer. Little Warrior is getting all of her nutrition from Mama and alcohol can interfere with chemo.
Please God, may next week's reality be so much better than my imagination.
Saturday, March 18, 2006
Humor Knows Its Place -- Everywhere
ChaliceChick had a great post about humor. And you know, I could use a little humor right now. Before All Of This, I was quite into humor. Loved doing an annual humor service at my home church.
Well, actually, I still love humor, and it's amazing how you can find it in even the more dire circumstances. Like when my great-aunt died, and even though she had crossed every t and dotted every i, my dad still had to fax papers back and forth and sign things. It was capped off by the 25 page document he had to sign to get her body cremated. One of the many items in that document stated, that "I understand that this process is irreversible."
What??? said my father. "No, I figured I could just add some water and reconstitute her!"
Or at 11:30 pm, the night that Little Warrior came out of a 9 hour surgical biopsy that was supposed to be 3 hours ... we were in the recovery area and the pulmonologist wandered by. We noted that her breathing was a little rough. "Well, sure, you should expect that when you remove the top half of her right lung." Little Warrior was supposed to get biopsies of her *kidneys.* The Husband and I both began gasping for air. "Oh!" said the pulmonologist. "Not her! That little girl over there! Sorry!"
So, in the spirit of "I need a laugh" ... some of my favorite UU jokes. (Which do not include any of the "we have no raison d'etre" jokes.)
Why are UU congregations so bad at hymn singing?
Because they are always reading a few lines ahead to see if they agree with the words.
You may be a Unitarian Universalist if you think socks are too formal for a Summer service.
You may be a Unitarian Universalist if you know at least 5 ways to say - Happy holidays!
You may be a Unitarian Universalist if your idea of a guy's night out is going to a N.O.W. rally.
You may be a Unitarian Universalist if unleavened bread is part of your Easter Brunch.
You may be a Unitarian Universalist if you refer to construction paper as "paper of color."
If you find yourself rewriting a church survey, rather than taking it, you might be a UU.
If you call up your minister in the middle of the night, panicking because you are STARTING to believe in God, you might be a UU.
If, to explain your personal theology, you have to use interpretive dance, you might be a UU.
You may be a Unitarian Universalist if you take your day planner to church instead of the Bible.
Not always true, but still funny ... especially for those of us who have taken a very-Christian-not-UU person to church:
Fellow goes to a UU service for the first time, and later is asked what he thought of it. "Darndest church I ever went to," he replies, "the only time I heard the name of Jesus Christ was when the janitor fell down the stairs."
And to end, a great Dostoyevsky quote:
"If you wish to glimpse inside a human soul and get to know the man, don't bother analyzing his ways of being silent, of talking, of weeping, or seeing how much he is moved by noble ideas; you'll get better results if you just watch him laugh. If he laughs well, he's a good man...All I claim to know is that laughter is the most reliable gauge of human nature."
Of course, anyone who laughs at Gallagher, I regard with a high degree of suspicion. But I consider "Better Off Dead" to be one of the funniest movies ever made. And my parents think the same of "The Coca-Cola Kid," which left me and The Husband scratching our heads. What can I say, humor is subjective.
Well, actually, I still love humor, and it's amazing how you can find it in even the more dire circumstances. Like when my great-aunt died, and even though she had crossed every t and dotted every i, my dad still had to fax papers back and forth and sign things. It was capped off by the 25 page document he had to sign to get her body cremated. One of the many items in that document stated, that "I understand that this process is irreversible."
What??? said my father. "No, I figured I could just add some water and reconstitute her!"
Or at 11:30 pm, the night that Little Warrior came out of a 9 hour surgical biopsy that was supposed to be 3 hours ... we were in the recovery area and the pulmonologist wandered by. We noted that her breathing was a little rough. "Well, sure, you should expect that when you remove the top half of her right lung." Little Warrior was supposed to get biopsies of her *kidneys.* The Husband and I both began gasping for air. "Oh!" said the pulmonologist. "Not her! That little girl over there! Sorry!"
So, in the spirit of "I need a laugh" ... some of my favorite UU jokes. (Which do not include any of the "we have no raison d'etre" jokes.)
Why are UU congregations so bad at hymn singing?
Because they are always reading a few lines ahead to see if they agree with the words.
You may be a Unitarian Universalist if you think socks are too formal for a Summer service.
You may be a Unitarian Universalist if you know at least 5 ways to say - Happy holidays!
You may be a Unitarian Universalist if your idea of a guy's night out is going to a N.O.W. rally.
You may be a Unitarian Universalist if unleavened bread is part of your Easter Brunch.
You may be a Unitarian Universalist if you refer to construction paper as "paper of color."
If you find yourself rewriting a church survey, rather than taking it, you might be a UU.
If you call up your minister in the middle of the night, panicking because you are STARTING to believe in God, you might be a UU.
If, to explain your personal theology, you have to use interpretive dance, you might be a UU.
You may be a Unitarian Universalist if you take your day planner to church instead of the Bible.
Not always true, but still funny ... especially for those of us who have taken a very-Christian-not-UU person to church:
Fellow goes to a UU service for the first time, and later is asked what he thought of it. "Darndest church I ever went to," he replies, "the only time I heard the name of Jesus Christ was when the janitor fell down the stairs."
And to end, a great Dostoyevsky quote:
"If you wish to glimpse inside a human soul and get to know the man, don't bother analyzing his ways of being silent, of talking, of weeping, or seeing how much he is moved by noble ideas; you'll get better results if you just watch him laugh. If he laughs well, he's a good man...All I claim to know is that laughter is the most reliable gauge of human nature."
Of course, anyone who laughs at Gallagher, I regard with a high degree of suspicion. But I consider "Better Off Dead" to be one of the funniest movies ever made. And my parents think the same of "The Coca-Cola Kid," which left me and The Husband scratching our heads. What can I say, humor is subjective.
Friday, March 17, 2006
Things you want to say ...
Okay, I'm stealing this from Anne of Supposedly This Is Good Therapy:
List ten things you want to say to people you know but you never will, for whatever reason. Don't say who they are. Use each person only once.
1. Get therapy, already!
2. Hit rock bottom, already, so you can go sober!
3. He's a jerk. We all know he is. Hold him accountable or kick him out.
4. Tell me what you'd say if I were another doctor and the patient wasn't my kid.
5. You're controlling and a know-it-all, but I really love you, and wish we could just hang out and really get to know each other as people.
6. Go for a nerd. They're much better lovers than Mr. Cool.
7. I love you but you drive people crazy.
8. You are mentally ill, we all know it, and we don't believe anything you say.
9. Your son thinks Jesus is going to reward him for telling everyone my son is an evil wizard, because we're Unitarian. Do you really consider that to be Christian behavior?
10. Ummm, priorities??? Little Warrior has cancer!
I told The Husband about this little exercise. "Hmm, am I on there?" Nope, I told him, I tell you everything I want to say.
Whether he wants me to, or not!
List ten things you want to say to people you know but you never will, for whatever reason. Don't say who they are. Use each person only once.
1. Get therapy, already!
2. Hit rock bottom, already, so you can go sober!
3. He's a jerk. We all know he is. Hold him accountable or kick him out.
4. Tell me what you'd say if I were another doctor and the patient wasn't my kid.
5. You're controlling and a know-it-all, but I really love you, and wish we could just hang out and really get to know each other as people.
6. Go for a nerd. They're much better lovers than Mr. Cool.
7. I love you but you drive people crazy.
8. You are mentally ill, we all know it, and we don't believe anything you say.
9. Your son thinks Jesus is going to reward him for telling everyone my son is an evil wizard, because we're Unitarian. Do you really consider that to be Christian behavior?
10. Ummm, priorities??? Little Warrior has cancer!
I told The Husband about this little exercise. "Hmm, am I on there?" Nope, I told him, I tell you everything I want to say.
Whether he wants me to, or not!
Wednesday, March 15, 2006
Attitude isn't everything ...
...but it's something.
Okay, so we got the news today that Little Warrior will have surgery in two weeks. The breath was a bit knocked out of me; I didn't really think it would be that soon.
Here's the deal. I can look at it as "these could be the last two weeks of her life." Or, I could look at it as "two weeks from now, she could be cancer-free!"
Though I generally am a glass half-full kind of person, I don't have much patience with the "blow sunshine" people. You know, the "everything will be okay" people. The "God never gives you more than you can handle" people.
But this is just survival. If I take the cheerful view of things, and events wind up NOT cheerful, has that cost me anything? No. Will I be more prepared for the worst? No. The worst would be the worst and there's no preparing for it.
If I take the fatalist approach, would it mean that I would cherish the next two weeks more? Nope. I'd be weepy and sad. However, if I take the positive view, then I will be more cheerful, which means I can genuinely enjoy my time with Little Warrior and the rest of the family.
So, prescription for the next two weeks: lots of pizza, watching movies together, and getting ready for positive things.
Either a positive outcome will happen or it won't. Either way, I've had that two weeks.
Okay, so we got the news today that Little Warrior will have surgery in two weeks. The breath was a bit knocked out of me; I didn't really think it would be that soon.
Here's the deal. I can look at it as "these could be the last two weeks of her life." Or, I could look at it as "two weeks from now, she could be cancer-free!"
Though I generally am a glass half-full kind of person, I don't have much patience with the "blow sunshine" people. You know, the "everything will be okay" people. The "God never gives you more than you can handle" people.
But this is just survival. If I take the cheerful view of things, and events wind up NOT cheerful, has that cost me anything? No. Will I be more prepared for the worst? No. The worst would be the worst and there's no preparing for it.
If I take the fatalist approach, would it mean that I would cherish the next two weeks more? Nope. I'd be weepy and sad. However, if I take the positive view, then I will be more cheerful, which means I can genuinely enjoy my time with Little Warrior and the rest of the family.
So, prescription for the next two weeks: lots of pizza, watching movies together, and getting ready for positive things.
Either a positive outcome will happen or it won't. Either way, I've had that two weeks.
Tuesday, March 14, 2006
Blind sided again
The cardiologist said that the problem with her heart ... which heretofore we had been told was simply because the tumors were squeezing everything up into her chest ... is cardiomyopathy, and not from the tumors. Not related to cancer. Just a little coincidence.
So, now, we are not only parents of a cancer patient, but also parents of a cardiac patient. And it's the same child.
Even when one knows better, one asks the question of the universe, "why is this happening?" Is it because I was greedy? I had three healthy children and I wanted one more?
I want to just feast my eyes on her and enjoy all the happiness I can ... but I cry. I cry because I *am* greedy and I want more than just this one moment.
So, now, we are not only parents of a cancer patient, but also parents of a cardiac patient. And it's the same child.
Even when one knows better, one asks the question of the universe, "why is this happening?" Is it because I was greedy? I had three healthy children and I wanted one more?
I want to just feast my eyes on her and enjoy all the happiness I can ... but I cry. I cry because I *am* greedy and I want more than just this one moment.
Monday, March 13, 2006
More news tomorrow
Well, we had a good 4 day weekend. Little Warrior seems to be feeling fairly good. She's sleeping a bit more than normal, but hey, she had two scoops of chemo on Thursday.
I've been able to just enjoy the time at home, but now I have "Sunday night disease." If you've ever had a job you detested, you know that illness. You'd like to keep enjoying the rest of your day, or evening, but your stomach has that sinking feeling and a voice keeps whispering, "Tomorrow. Tomorrow."
Nothing horrible, tomorrow, just a potential for more bad news. We're meeting with the cardiologist. I don't entirely know what's going to happen. They might do an EKG, but the nurse today said they *won't* do another echocardiogram.
So, tomorrow is a "no eye makeup" day. In case there's any need to cry.
I've been able to just enjoy the time at home, but now I have "Sunday night disease." If you've ever had a job you detested, you know that illness. You'd like to keep enjoying the rest of your day, or evening, but your stomach has that sinking feeling and a voice keeps whispering, "Tomorrow. Tomorrow."
Nothing horrible, tomorrow, just a potential for more bad news. We're meeting with the cardiologist. I don't entirely know what's going to happen. They might do an EKG, but the nurse today said they *won't* do another echocardiogram.
So, tomorrow is a "no eye makeup" day. In case there's any need to cry.
Saturday, March 11, 2006
Painted Ladies 'a Trois
We have a lot of lantana in our yard that is now in bloom. Apparently, "lantana" is butterfly for "Viagra."
Just watched three painted ladies have a menage a trois. Butterflies, I mean. One got kicked out of the fun, and the two remaining flew off together, still going at it, up, up, up, into one of our skyscraper pine trees.
Now, how can you not be cheered by that?
Just watched three painted ladies have a menage a trois. Butterflies, I mean. One got kicked out of the fun, and the two remaining flew off together, still going at it, up, up, up, into one of our skyscraper pine trees.
Now, how can you not be cheered by that?
Friday, March 10, 2006
Turn ON the Lights, the Party's Over
Pity party is over. Thank you for attending, please pick up your souvenir tote bag on the way out.
Two of my heroes threw a hand down into the abyss and pulled me up. Neither of them know they are my heroes (ewww, doesn't that sound like a cheesy song?).
I've never met her, or heard her speak, but I've been a huge fan of Rev. Christine Robinson for quite some time now. I found her sermons on the First Church Albuquerque site probably a couple of years ago. Thought they were brilliant, even printed a lot of them out and sent them to my parents. Planned on asking her permission to share some of them in our church's "new UU" orientation. (Hadn't gotten around to taking on the job of orientations when this began.) To a UU seminary geek like me, she's Elvis.
In a penultimate coincidence (most people think penultimate means "beyond" ultimate. I means "one shy of ultimate," or in this case, "we're both Unitarian and this blog is linked to some other blog sites"), the very Reverend visited my blog when I was feeling very lost and left a little comment to let me know I wasn't alone.
Isn't that just like a UU minister to be on sabbatical (I read her profile) and yet still ministering. To a stranger, yet.
Well, that coincidence propelled me enough out of my funk to go back to the UU Alb. site. Found a sermon I hadn't yet read, called Singing in the Dark.
It was about that time that the mail came, and with it, "The Essential Willie Nelson," cd.
I don't just like Willie's music, which I was raised on, but I like the man. I like what he does with his celebrity. I kinda think that if Jesus were to return, he might kinda look and act like ole Willie. At the very least, he'd hang out with him.
So, I'm reading the Rev's sermon about making it through the dark times, and listening to Willie sing "If you've got the money, honey, I've got the time ..." I defy anyone to stay in a bad mood listening to that song.
I'm sure I'm going to be sad again. But right now, the sadness is because of fear, fear of what I can imagine happening in the future. Today, Little Warrior is playing and squealing. We're having tacos for dinner and the kids started spring break. The Husband is bringing home a copy of the latest Harry Potter movie as a surprise. Classify these as good times.
Thank you, Rev. Robinson. Thank you, Willie.
Two of my heroes threw a hand down into the abyss and pulled me up. Neither of them know they are my heroes (ewww, doesn't that sound like a cheesy song?).
I've never met her, or heard her speak, but I've been a huge fan of Rev. Christine Robinson for quite some time now. I found her sermons on the First Church Albuquerque site probably a couple of years ago. Thought they were brilliant, even printed a lot of them out and sent them to my parents. Planned on asking her permission to share some of them in our church's "new UU" orientation. (Hadn't gotten around to taking on the job of orientations when this began.) To a UU seminary geek like me, she's Elvis.
In a penultimate coincidence (most people think penultimate means "beyond" ultimate. I means "one shy of ultimate," or in this case, "we're both Unitarian and this blog is linked to some other blog sites"), the very Reverend visited my blog when I was feeling very lost and left a little comment to let me know I wasn't alone.
Isn't that just like a UU minister to be on sabbatical (I read her profile) and yet still ministering. To a stranger, yet.
Well, that coincidence propelled me enough out of my funk to go back to the UU Alb. site. Found a sermon I hadn't yet read, called Singing in the Dark.
It was about that time that the mail came, and with it, "The Essential Willie Nelson," cd.
I don't just like Willie's music, which I was raised on, but I like the man. I like what he does with his celebrity. I kinda think that if Jesus were to return, he might kinda look and act like ole Willie. At the very least, he'd hang out with him.
So, I'm reading the Rev's sermon about making it through the dark times, and listening to Willie sing "If you've got the money, honey, I've got the time ..." I defy anyone to stay in a bad mood listening to that song.
I'm sure I'm going to be sad again. But right now, the sadness is because of fear, fear of what I can imagine happening in the future. Today, Little Warrior is playing and squealing. We're having tacos for dinner and the kids started spring break. The Husband is bringing home a copy of the latest Harry Potter movie as a surprise. Classify these as good times.
Thank you, Rev. Robinson. Thank you, Willie.
sad
Before All of This, I was a Happy Person. Prided myself on it, actually. I was pretty good at making the choice to be happy, and then be happy.
I can't do it.
I'm so sad. And I just don't know how to stop.
I can't do it.
I'm so sad. And I just don't know how to stop.
Thursday, March 09, 2006
Desperately seeking "Normal"
Oh my God, I miss normal. I miss it with every fiber of my being. I ache for it.
I didn't realize how much until today. First, we had a "not normal" day, though one that has turned into normal ... today was chemo day. Little Warrior was supposed to begin a new chemo (doxorubicin) but it turns out that the echocardiogram showed that her heart isn't working the way it should. (It's having to work extra hard because the tumors are shoving everything up into her chest.)
So, because of that, we need to hold off on the doxorubicin, because it can cause problems on down the line. She'll see a cardiologist next week, then the cardio will meet with the oncologist and the surgeon and they'll determine whether the risk is worth it.
But that's not what made me realize how much I missed normal.
Back at home, I was looking for something in the hall closet. Rummaging there, I came across all of her cloth diapers.
The last time I looked at one of her cloth diapers was before this all began. Since she's on chemo, she has to use disposable diapers now, since we don't want excreted chemo going through our laundry, staying in her clothes, etc.
It's not like the cloth diapers are that big a deal to me. But just seeing them, it was like when you smell playdough and are instantly transported back to kindergarten. Except I was transported back to "normal." A place where I could do such wonderful things as go to the grocery store, or meet a friend for lunch with Little Warrior and Bo Peep in tow.
A place where I could look at Little Warrior and just see a cute little baby.
I didn't realize how much until today. First, we had a "not normal" day, though one that has turned into normal ... today was chemo day. Little Warrior was supposed to begin a new chemo (doxorubicin) but it turns out that the echocardiogram showed that her heart isn't working the way it should. (It's having to work extra hard because the tumors are shoving everything up into her chest.)
So, because of that, we need to hold off on the doxorubicin, because it can cause problems on down the line. She'll see a cardiologist next week, then the cardio will meet with the oncologist and the surgeon and they'll determine whether the risk is worth it.
But that's not what made me realize how much I missed normal.
Back at home, I was looking for something in the hall closet. Rummaging there, I came across all of her cloth diapers.
The last time I looked at one of her cloth diapers was before this all began. Since she's on chemo, she has to use disposable diapers now, since we don't want excreted chemo going through our laundry, staying in her clothes, etc.
It's not like the cloth diapers are that big a deal to me. But just seeing them, it was like when you smell playdough and are instantly transported back to kindergarten. Except I was transported back to "normal." A place where I could do such wonderful things as go to the grocery store, or meet a friend for lunch with Little Warrior and Bo Peep in tow.
A place where I could look at Little Warrior and just see a cute little baby.
Wednesday, March 08, 2006
Not *this* kind of attention
Okay, I'll admit it. Prior to this, I loved attention. Loved getting up and doing sermons, no shyness in the pulpit or the center ring. Sure, it's positive attention, right? And the attention I got -- though brief -- when I had the emergency appendectomy, well that was nice, too. Coupla casseroles, a few get well cards, nice to be nurtured.
But the attention for this ... I hate it.
I mean, I guess the alternative ... getting no attention, no one wanting to lift our spirits, bringing over casseroles and prayers ... I'm sure it would be worse. The one thing I have *never* felt in all of this is "alone." I am incredibly blessed to have friends who keep remembering me, neighbor ladies who have been bringing over little presents to "lift my spirits" (how thoughtful is that???), family that jumps to help even without us asking ...
But I don't like this attention. I don't like being "the lady with the baby with cancer." I don't like trying to appear upbeat and positive when almost-strangers ask me how Little Warrior is doing. I don't like writing thank you notes for all the little niceties that have been done. (And I'm normally an oddball who *does* enjoy writing thank-you's.)
Yeah, I'm grateful. And when I think about it all, I know that it *does* help me, *does* lift my spirits.
And maybe that's the part I really hate. That I need the help. That I need the attention.
But the attention for this ... I hate it.
I mean, I guess the alternative ... getting no attention, no one wanting to lift our spirits, bringing over casseroles and prayers ... I'm sure it would be worse. The one thing I have *never* felt in all of this is "alone." I am incredibly blessed to have friends who keep remembering me, neighbor ladies who have been bringing over little presents to "lift my spirits" (how thoughtful is that???), family that jumps to help even without us asking ...
But I don't like this attention. I don't like being "the lady with the baby with cancer." I don't like trying to appear upbeat and positive when almost-strangers ask me how Little Warrior is doing. I don't like writing thank you notes for all the little niceties that have been done. (And I'm normally an oddball who *does* enjoy writing thank-you's.)
Yeah, I'm grateful. And when I think about it all, I know that it *does* help me, *does* lift my spirits.
And maybe that's the part I really hate. That I need the help. That I need the attention.
Tuesday, March 07, 2006
Damn that Don Williams
Haven't cried about getting the news that the tumors haven't shrunk. Too much to do, plus, I don't want the children to see me weeping all the time. So I say, I'll cry after they go to bed. But after they go to bed, I get busy doing things, and going to bed.
So, I take Little Warrior to get an echo today. Am driving back home, idly singing along with the "classic country" station (the last good country music, with some exceptions, was the 70's, in my opinion). Get to a line from a Don Williams' song:
"...I should be thankful, Lord, I know I should. But Lord I hope this day is good."
Blimey. Tears are rolling down my cheeks.
Damn you, Don Williams! (shakes fist at the sky)
So, I take Little Warrior to get an echo today. Am driving back home, idly singing along with the "classic country" station (the last good country music, with some exceptions, was the 70's, in my opinion). Get to a line from a Don Williams' song:
"...I should be thankful, Lord, I know I should. But Lord I hope this day is good."
Blimey. Tears are rolling down my cheeks.
Damn you, Don Williams! (shakes fist at the sky)
Monday, March 06, 2006
Babies With Cancer Resources
Specifically ... there don't seem to be any. You've got your "Make a Wish" foundation and "Sunshine Kids" and such, but they all require the patient to be at least 3. Which I can understand, they want to help the kids who can appreciate it. But babies ... and the families of babies with cancer ... have some different and specific needs.
So ... if I had the money to start a foundation for babies with cancer, what would it do?
Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...
What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.
Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?
OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.
Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.
So ... if I had the money to start a foundation for babies with cancer, what would it do?
Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...
What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.
Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?
OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.
Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.
Phooey on Statistics
Bummer.
Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.
So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.
The statistics, overall, for Wilms' look great -- 90+% survival.
However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.
So, 90% survival ... means 1 in 10 won't survive.
1/10.
1/10,000
I won't keep going with the math.
Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.
So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.
The statistics, overall, for Wilms' look great -- 90+% survival.
However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.
So, 90% survival ... means 1 in 10 won't survive.
1/10.
1/10,000
I won't keep going with the math.
Saturday, March 04, 2006
Classify these "Good Times"
I wonder how we will look back on this time.
Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.
But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)
Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.
As Willie Nelson sang, "Classify these good times."
Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.
But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)
Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.
As Willie Nelson sang, "Classify these good times."
Wednesday, March 01, 2006
Tomorrow, early
Ugh. Gotta get up at 5:30, in order to make it to the hospital by 7:30 for Little Warrior to get a CT Scan at ... 1:00??? Grr.
This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.
This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.
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