For the last six months, on a day like this, I'd be packing up, prepping food for home and hospital, and planning on going in the hospital Tuesday.
Well, Little Warrior finished "Regimen I" on Halloween. Technically, she's still been on chemo since then, as part of the cycle is when it's in her system.
Tomorrow morning, we will get up early to go to the hospital. CT scan in the morning, which means fasting, then drinking lots of yucky contrast. Meeting with her oncologist around noon. Echocardiogram at 2ish, because one of her chemos is really hard on the heart.
About a week ago, we got the news that Regimen UH-1 had been discontinued because two of its chemos, cytoxan and doxorubicin, had toxicity issues. As in, children dying while on treatment.
She's been taking those chemos.
Tomorrow, we should find out if the cancer is still gone. We should find out if there's any problems with her heart.
We've already had to learn the lesson that "No Evidence of Disease" merely means that they can't see anything. And that life off-treatment can change to "fighting it again" in just one scan.
So it's not like any part of us sees tomorrow as the end of cancer. Best case scenario is that we go to no treatment, just watching ... and waiting.
I will take it. And celebrate it, should we be so lucky to get it.
In the meantime ... go check the comments on We're Never Going to Grow. Lots of interesting conversation about perceived superiority, class attitudes, and how we treat differences in income/education level in our churches. Weigh in with your opinion.
Sunday, November 16, 2008
Friday, November 14, 2008
How to Do Coupons
Do you want to save money on groceries? Really, really save money? Okay. I've got your back.
Myths:
I can't coupon because I'm vegetarian
I can't coupon because I don't eat processed foods
If you coupon, you'll spend more, buying stuff you won't use
Oh, I'm sure there's more myths. Here's the deal. When I was at the height of my best power couponing, my partner in it was a vegan, the kind of vegan who knew that regular Oreos weren't vegan, but mint Oreos were. And she saved tons of money. Re: processed foods, yep, you can save a lot of money on those, but in my binder right now are coupons for eggs, milk, soy milk, salad, bread, and flour. And cleaning products. And toilet paper. And dog food. And candles.
If you really want to save money by couponing, it's not the same thing as when my Mama would clip a few coupons and stick them in the coupon drawer. Power Couponing. I know there are tons of websites with even more tips, but I'll give you the bare bones.
1) The name of the game is "Combining." You want to combine your coupons with grocery store sales.
2) The middle name of the game is "Stocking Up." You're not shopping for this week, you're shopping for your in-home "store."
What I've done in the past is to use a zippered binder filled with the plastic pages they sell for collecting baseball cards. They're perfect for holding coupons. Divide your binder into sections -- dairy, frozen, baking supplies, cleaning, toiletries -- you get the picture. When you put a coupon in, make sure the expiration date is showing.
I'm trying something a little different right now. I date the coupon flyers and file them according to the name of the flyer company, e.g. "Smart Source," "Red Plum," "P & G."
Reason why I'm trying this way is because of this site:
http://www.couponmom.com/
This website -- free -- is wonderful. If you live in or near a major metro area, you can go to "Grocery Deals" by state every week, and for different grocery stores, she posts the item on sale, and the coupon you can also apply. Here's an example:
11-02 RP means that there was a coupon for this item in the 11-02 Red Plum circular. The sale price is 1.00 per can. The coupon specifies you purchase 2 cans. The coupon value is .50 a can, but this store doubles up to .50. Additionally, this store is doing a Thanksgiving promotion where you get 5.00 off, for every 10 qualifying items purchased, making the sale price effectively .50 a can.
So ... 2 x .50 = 1.00 - .50 doubled = 2 cans of evaporated milk, free.
I know this sounds complicated. It really isn't. And this website does most of the work for you.
Okay, so there's kind of a starting point. Just google "couponing" and you can find out far, far more. Ask your friends and neighbors who don't coupon for their Sunday circulars.
When I was really disciplined about it, I generally spent $30 or less, per week on groceries, for a family of 5. And donated tons of stuff we don't like -- Hamburger Helper and such -- to the food pantry. Things like pickles, mustard, dry pasta, I NEVER spent money on. Those, you could usually find for free. And along with the savings, my husband loved it because we always had a big stash of deodorant, shaving cream, etc. No last minute runs to the store.
Now, if you only shop at Whole Foods, or just don't have time for this, or think couponing is distasteful, hey, I'm not trying to talk you into it.
But for those who are interested -- give it a try. I've done bare bones, only buying generics, lots of rice and beans shopping, and I've done couponing, which is generally brand-name, lot of variety ... and the couponing was wayyy cheaper.
Myths:
I can't coupon because I'm vegetarian
I can't coupon because I don't eat processed foods
If you coupon, you'll spend more, buying stuff you won't use
Oh, I'm sure there's more myths. Here's the deal. When I was at the height of my best power couponing, my partner in it was a vegan, the kind of vegan who knew that regular Oreos weren't vegan, but mint Oreos were. And she saved tons of money. Re: processed foods, yep, you can save a lot of money on those, but in my binder right now are coupons for eggs, milk, soy milk, salad, bread, and flour. And cleaning products. And toilet paper. And dog food. And candles.
If you really want to save money by couponing, it's not the same thing as when my Mama would clip a few coupons and stick them in the coupon drawer. Power Couponing. I know there are tons of websites with even more tips, but I'll give you the bare bones.
1) The name of the game is "Combining." You want to combine your coupons with grocery store sales.
2) The middle name of the game is "Stocking Up." You're not shopping for this week, you're shopping for your in-home "store."
What I've done in the past is to use a zippered binder filled with the plastic pages they sell for collecting baseball cards. They're perfect for holding coupons. Divide your binder into sections -- dairy, frozen, baking supplies, cleaning, toiletries -- you get the picture. When you put a coupon in, make sure the expiration date is showing.
I'm trying something a little different right now. I date the coupon flyers and file them according to the name of the flyer company, e.g. "Smart Source," "Red Plum," "P & G."
Reason why I'm trying this way is because of this site:
http://www.couponmom.com/
This website -- free -- is wonderful. If you live in or near a major metro area, you can go to "Grocery Deals" by state every week, and for different grocery stores, she posts the item on sale, and the coupon you can also apply. Here's an example:
| 11-02 RP | Nestle Carnation Evaporated Milk 12 oz (qualifies for Mix & Match Offer -- final price assumes the purchase of 10 participating items) -- charity! | $1.00 | 2 | $0.50 | FREE | 100% |
11-02 RP means that there was a coupon for this item in the 11-02 Red Plum circular. The sale price is 1.00 per can. The coupon specifies you purchase 2 cans. The coupon value is .50 a can, but this store doubles up to .50. Additionally, this store is doing a Thanksgiving promotion where you get 5.00 off, for every 10 qualifying items purchased, making the sale price effectively .50 a can.
So ... 2 x .50 = 1.00 - .50 doubled = 2 cans of evaporated milk, free.
I know this sounds complicated. It really isn't. And this website does most of the work for you.
Okay, so there's kind of a starting point. Just google "couponing" and you can find out far, far more. Ask your friends and neighbors who don't coupon for their Sunday circulars.
When I was really disciplined about it, I generally spent $30 or less, per week on groceries, for a family of 5. And donated tons of stuff we don't like -- Hamburger Helper and such -- to the food pantry. Things like pickles, mustard, dry pasta, I NEVER spent money on. Those, you could usually find for free. And along with the savings, my husband loved it because we always had a big stash of deodorant, shaving cream, etc. No last minute runs to the store.
Now, if you only shop at Whole Foods, or just don't have time for this, or think couponing is distasteful, hey, I'm not trying to talk you into it.
But for those who are interested -- give it a try. I've done bare bones, only buying generics, lots of rice and beans shopping, and I've done couponing, which is generally brand-name, lot of variety ... and the couponing was wayyy cheaper.
Thursday, November 13, 2008
"We're Never Going to Grow"
I was surrounded by coupons when the BFF-DRE called. "Have you seen the latest UU World?" she asked. "Not yet," I said, pinching the phone between my shoulder and my ear so that I could move the coupons that will give me free Carnation evaporated milk into the "going shopping tomorrow" pocket of my binder.
"We're never going to grow," she said.
I extracted myself from under the coupons for dog food, toothpaste, and flour and went to the mailbox. I read the article she referenced, "Dinner Dilemmas, Ethical Issues at the Thanksgiving Dinner Table."
"We're never going to grow," I sighed.
When The Husband came home, I handed him the article, without any comment. He read it. He shook his head.
"We're never going to grow."
None of this is embellishment for poetry's sake. Those were the exact words all of us used. (And I really was cutting coupons today.)
First of all, if you really want to compare apples to apples, I and the majority of the people I know, will be buying our turkey with the .39/lb voucher or coupon, not the "cheapest" option in the article, the $2.69 turkey. My friends who are vegetarian will be eating something that will probably involve tofu or seitan but tofurkey? Too expensive for their blood, thanks.
We got hard times coming, folks. Our job should be to reach out, show how to do more with less, (upcoming lesson on couponing will be forthcoming from yours truly) ... not imply that yeah, you can buy your cheap turkey, but you're poisoning your children, the earth, stealing money from hard working farmers and then there's the turkey ...
I'm sure there was much research and analysis put into this article. But with apologies to Dr. Phil, do you wanna be right or do you want to reach out to people?
Not all UUs have the opportunity nor the means to pop over to Whole Foods for our Thanksgiving dinner.
Wait ... I just admitted that I don't shop at Whole Foods. Will my UU "member in good standing" card be revoked?
Articles like this make a very clear point: if you can afford to, you should buy organic, free range, humane to the workers and the animal, products. If you can't afford to ... you should do without. Eat a cheese sandwich.
Organic tofu cheese, of course.
"We're never going to grow," she said.
I extracted myself from under the coupons for dog food, toothpaste, and flour and went to the mailbox. I read the article she referenced, "Dinner Dilemmas, Ethical Issues at the Thanksgiving Dinner Table."
"We're never going to grow," I sighed.
When The Husband came home, I handed him the article, without any comment. He read it. He shook his head.
"We're never going to grow."
None of this is embellishment for poetry's sake. Those were the exact words all of us used. (And I really was cutting coupons today.)
First of all, if you really want to compare apples to apples, I and the majority of the people I know, will be buying our turkey with the .39/lb voucher or coupon, not the "cheapest" option in the article, the $2.69 turkey. My friends who are vegetarian will be eating something that will probably involve tofu or seitan but tofurkey? Too expensive for their blood, thanks.
We got hard times coming, folks. Our job should be to reach out, show how to do more with less, (upcoming lesson on couponing will be forthcoming from yours truly) ... not imply that yeah, you can buy your cheap turkey, but you're poisoning your children, the earth, stealing money from hard working farmers and then there's the turkey ...
I'm sure there was much research and analysis put into this article. But with apologies to Dr. Phil, do you wanna be right or do you want to reach out to people?
Not all UUs have the opportunity nor the means to pop over to Whole Foods for our Thanksgiving dinner.
Wait ... I just admitted that I don't shop at Whole Foods. Will my UU "member in good standing" card be revoked?
Articles like this make a very clear point: if you can afford to, you should buy organic, free range, humane to the workers and the animal, products. If you can't afford to ... you should do without. Eat a cheese sandwich.
Organic tofu cheese, of course.
Wednesday, November 12, 2008
God and the Kitty
"God gave me this kitty," Little Warrior explained to the neighbor. And the person at the store. And the nurse.
We have a kindly, if brusque, crossing guard who helps Bo Peep and The Princess cross the street twice every school day. His granddaughter is in the same grade as The Princess, so he knows all about Little Warrior. Right before LW went in for her last (we hope) chemo, he sent home a wrapped package with the girls. Inside was a Webkinz kitty for Little Warrior.
LW knows him as "The Crossing Guard." She leaves off the article and the adjective and tells everyone that Guard gave her the kitty. Except she pronounces Guard "God."
One of the very sweet things when you go through something like this, is the outpouring from strangers. People who don't know you personally, they just know "of" you. And they feel the urge to reach out, to give your daughter a little bit of happiness.
Sounds like God to me.
We have a kindly, if brusque, crossing guard who helps Bo Peep and The Princess cross the street twice every school day. His granddaughter is in the same grade as The Princess, so he knows all about Little Warrior. Right before LW went in for her last (we hope) chemo, he sent home a wrapped package with the girls. Inside was a Webkinz kitty for Little Warrior.
LW knows him as "The Crossing Guard." She leaves off the article and the adjective and tells everyone that Guard gave her the kitty. Except she pronounces Guard "God."
One of the very sweet things when you go through something like this, is the outpouring from strangers. People who don't know you personally, they just know "of" you. And they feel the urge to reach out, to give your daughter a little bit of happiness.
Sounds like God to me.
Waking Up
Last week, as I was falling asleep, The Voice asked me, "What would make you happy right now?"
"For Little Warrior to not have cancer, to be skinny again, and to have a clean house," I answered promptly.
"Well," said The Voice in a gently mocking tone, "Two of those, you can take care of, all by yourself." And in a softer tone, The Voice said, "As for the other, you've done as much as you can do."
The next morning, when I woke up ... I Woke Up.
Today, I took Little Warrior for what I hope was her last time to get her finger pricked at the local doctor's office for a CBC. Afterwards, we stopped at Starbucks or as she calls it, the Cinnamon Cake Store, for a piece of cinnamon coffee cake. She was happy and jabbering away at everyone. "You're so pretty," said the lady behind us. "No, I'm Froggy Girl," LW corrected her. (Her secret superhero identity.)
"I have never seen her not smiling!" exclaimed the Barrista.
Oh, I have.
Having gone through this twice, I am a bit bemused that both times, ideas left me. I don't mean I was hopeless, or didn't think about things, or all was dark.
I mean ideas. Those butterfly gems that flit in and around you. Some go through your head then quickly disappear ... I know I had a good idea earlier ... some stay and grow, turning into sermons or projects or articles. I am an idea person. I don't mean that as a brag. "She has a thousand dreams, that won't come true. You know that she believes in them, and that's enough for you." For every one good idea that I follow up on, there are a hundred others that fall by the wayside. To have none swimming through my head leaves a cold vacuum.
Butterfly gems ... yep, that's how I see them. Imagine a big ole diamond with wings. Hard to catch. But if you're real still ... or, you know, have a butterfly net ...
First time we did cancer, I didn't know that the butterfly gems would come back. I just knew that I would never get in the pulpit again, would never go back to seminary, would never be a minister. Because I had nothing to say.
This time, I guess I subconsciously knew that it was just part of cancer, for me at least. So, I filled the vacuum by reading a lot of internet, watching a lot of tv. The political season provided a nice distraction.
Years ago, my sister left her abusive husband. It wasn't an up-and-do-it thing. It was well planned, took about 6 months. During that time, along with secretly packing things away, she became obsessed with the OJ trial. OB-SESSED. Didn't miss a minute of it, watched all the analysis, everything.
So I guess she and I have another thing in common.
This morning, driving to the doctor's office, driving to Starbucks, butterfly gems are all around. I'm glad they've come back.
Next week, we'll go for scans to find out if Cancer, The Sequel is over with. For now, at least. If they are, I'll go over to my seminary to pick up the spring semester registration form and make an appointment with my advisor.
Intro to Pastoral Care. Sounds good. And you know, I just might have some ideas on that topic. If I can catch them.
"For Little Warrior to not have cancer, to be skinny again, and to have a clean house," I answered promptly.
"Well," said The Voice in a gently mocking tone, "Two of those, you can take care of, all by yourself." And in a softer tone, The Voice said, "As for the other, you've done as much as you can do."
The next morning, when I woke up ... I Woke Up.
Today, I took Little Warrior for what I hope was her last time to get her finger pricked at the local doctor's office for a CBC. Afterwards, we stopped at Starbucks or as she calls it, the Cinnamon Cake Store, for a piece of cinnamon coffee cake. She was happy and jabbering away at everyone. "You're so pretty," said the lady behind us. "No, I'm Froggy Girl," LW corrected her. (Her secret superhero identity.)
"I have never seen her not smiling!" exclaimed the Barrista.
Oh, I have.
Having gone through this twice, I am a bit bemused that both times, ideas left me. I don't mean I was hopeless, or didn't think about things, or all was dark.
I mean ideas. Those butterfly gems that flit in and around you. Some go through your head then quickly disappear ... I know I had a good idea earlier ... some stay and grow, turning into sermons or projects or articles. I am an idea person. I don't mean that as a brag. "She has a thousand dreams, that won't come true. You know that she believes in them, and that's enough for you." For every one good idea that I follow up on, there are a hundred others that fall by the wayside. To have none swimming through my head leaves a cold vacuum.
Butterfly gems ... yep, that's how I see them. Imagine a big ole diamond with wings. Hard to catch. But if you're real still ... or, you know, have a butterfly net ...
First time we did cancer, I didn't know that the butterfly gems would come back. I just knew that I would never get in the pulpit again, would never go back to seminary, would never be a minister. Because I had nothing to say.
This time, I guess I subconsciously knew that it was just part of cancer, for me at least. So, I filled the vacuum by reading a lot of internet, watching a lot of tv. The political season provided a nice distraction.
Years ago, my sister left her abusive husband. It wasn't an up-and-do-it thing. It was well planned, took about 6 months. During that time, along with secretly packing things away, she became obsessed with the OJ trial. OB-SESSED. Didn't miss a minute of it, watched all the analysis, everything.
So I guess she and I have another thing in common.
This morning, driving to the doctor's office, driving to Starbucks, butterfly gems are all around. I'm glad they've come back.
Next week, we'll go for scans to find out if Cancer, The Sequel is over with. For now, at least. If they are, I'll go over to my seminary to pick up the spring semester registration form and make an appointment with my advisor.
Intro to Pastoral Care. Sounds good. And you know, I just might have some ideas on that topic. If I can catch them.
Tuesday, November 11, 2008
If I Were Arrested ...
Today's meme, from the BFF-DRE:
If you saw me in a police car, what would you think I got arrested for? Answer, then if you want, post to your own journal and see how many crimes you get accused of.
(No fair looking at other comments first.)
If you saw me in a police car, what would you think I got arrested for? Answer, then if you want, post to your own journal and see how many crimes you get accused of.
(No fair looking at other comments first.)
Monday, November 10, 2008
FREE Bone Marrow Registration during November
I know you've been wanting to do this, but the $52 fee for doing a good deed slowed you down. You didn't have your credit card by the computer. Or at least that's what happened to me.
For the month of November, thanks to a generous donation, you can sign up to be on the bone marrow donation list -- for free!
Simply go to: http://marrow.org/ and at the "Become a donor" box, click Join. It'll take a few minutes to register, so plan accordingly.
If you join by November 30, then they'll send you a kit -- all you have to do is swab inside your cheek and send it back. Presto, you're on the list.
And you've done a pretty fabulous good deed, right in time for Thanksgiving.
Pass this on to your friends and family!
p.s. To my gay male friends ... I'm sorry, but it's just like donating blood, which is a bummer. Maybe that'll change under President Obama.
For the month of November, thanks to a generous donation, you can sign up to be on the bone marrow donation list -- for free!
Simply go to: http://marrow.org/ and at the "Become a donor" box, click Join. It'll take a few minutes to register, so plan accordingly.
If you join by November 30, then they'll send you a kit -- all you have to do is swab inside your cheek and send it back. Presto, you're on the list.
And you've done a pretty fabulous good deed, right in time for Thanksgiving.
Pass this on to your friends and family!
p.s. To my gay male friends ... I'm sorry, but it's just like donating blood, which is a bummer. Maybe that'll change under President Obama.
Friday, November 07, 2008
Art and Critical Thought Are Not Mutually Exclusive
I've been on a forced blogging break, due to an unrelenting headache that seems now to be abating. Let me just say, to those of you who suffer chronic migraines: man, am I sorry. I don't know how you accomplish anything.
It was good though, to have a break, because when I read the comment to my posting of The Tide is Turning video, my first thought was, "Boy, do I disagree with you!"
I do disagree with the commenter, but time gave me the opportunity to reflect on something else I admire about Obama -- he knows how to speak to a variety of folks.
When I first saw this was his speech at the Democratic convention. "What'd you think?" my mom asked, calling me up after the speech.
"Well ... what did you think?" I hedged.
"Well ... I don't know, both your dad and I thought it was missing something. It just wasn't as dynamic as some he's given."
Which was exactly how I felt.
Shortly after, my sister, an undecided, called. "That speech ... oh my God, now I get it! He has my vote. That was amazing!"
And I heard that sentiment echoed by several other not-Obama supporters. Like Pat Buchanan:
"It was a genuinely outstanding speech, it was magnificent. I saw Cuomo's speech, I saw Kennedy in '80, I even saw Douglas MacArthur, I saw MLK; this is the greatest convention speech and probably the most important because unlike Cuomo and the others, this was an acceptance speech, this came out of the heart of America, and he went right at the heart of America. This wasn't a liberal speech at all. This is a deeply, deeply centrist speech. It had wit, it had humor, and when he used the needle on McCain, he stuck it into McCain and it was funny. It was Kennedy's speech in '80. I laughed with Kennedy when he was needling Ronald Reagan."
Most of us, if something is working, we keep doing it. But Obama understood that he already had my vote, he already my mother's vote. He knew how to talk to those who weren't already sold.
Wow, thought I ... someone whose judgment is better than mine. Whoo-hoo!
Now, as to the issue in the comment: "Critical thought doesn't respond to gushy little songs."
I believe that "Anonymous" is looking at the equation backward. It is not about response, it is about creativity. The issue is not that a gushy little song could affect someone's vote (I don't believe it could), it's that the candidate inspires such strength of feeling, he motivates others to put their feelings of hope into song, art, or video.
Or cupcakes.
He inspires people. And that's good, because I suspect that the President Obama is going to ask citizens to make some hard choices, some sacrifices.
Poetry, art, are not mutually exclusive to critical thought. Have you read Audacity of Hope? I have. It's specifics. It's details.
A man with a plan can be inspiring. And as for posting videos and such, as the BFF-DRE says, (whom I will tell you, is a critical thinker with a jaundiced eye to corny rhetoric), "Sometimes, I want to surrender to a little bit of joy."
Right now is the time for that. Because come January, there is much work to be done. By all of us.
It was good though, to have a break, because when I read the comment to my posting of The Tide is Turning video, my first thought was, "Boy, do I disagree with you!"
I do disagree with the commenter, but time gave me the opportunity to reflect on something else I admire about Obama -- he knows how to speak to a variety of folks.
When I first saw this was his speech at the Democratic convention. "What'd you think?" my mom asked, calling me up after the speech.
"Well ... what did you think?" I hedged.
"Well ... I don't know, both your dad and I thought it was missing something. It just wasn't as dynamic as some he's given."
Which was exactly how I felt.
Shortly after, my sister, an undecided, called. "That speech ... oh my God, now I get it! He has my vote. That was amazing!"
And I heard that sentiment echoed by several other not-Obama supporters. Like Pat Buchanan:
"It was a genuinely outstanding speech, it was magnificent. I saw Cuomo's speech, I saw Kennedy in '80, I even saw Douglas MacArthur, I saw MLK; this is the greatest convention speech and probably the most important because unlike Cuomo and the others, this was an acceptance speech, this came out of the heart of America, and he went right at the heart of America. This wasn't a liberal speech at all. This is a deeply, deeply centrist speech. It had wit, it had humor, and when he used the needle on McCain, he stuck it into McCain and it was funny. It was Kennedy's speech in '80. I laughed with Kennedy when he was needling Ronald Reagan."
Most of us, if something is working, we keep doing it. But Obama understood that he already had my vote, he already my mother's vote. He knew how to talk to those who weren't already sold.
Wow, thought I ... someone whose judgment is better than mine. Whoo-hoo!
Now, as to the issue in the comment: "Critical thought doesn't respond to gushy little songs."
I believe that "Anonymous" is looking at the equation backward. It is not about response, it is about creativity. The issue is not that a gushy little song could affect someone's vote (I don't believe it could), it's that the candidate inspires such strength of feeling, he motivates others to put their feelings of hope into song, art, or video.
Or cupcakes.
He inspires people. And that's good, because I suspect that the President Obama is going to ask citizens to make some hard choices, some sacrifices.
Poetry, art, are not mutually exclusive to critical thought. Have you read Audacity of Hope? I have. It's specifics. It's details.
A man with a plan can be inspiring. And as for posting videos and such, as the BFF-DRE says, (whom I will tell you, is a critical thinker with a jaundiced eye to corny rhetoric), "Sometimes, I want to surrender to a little bit of joy."
Right now is the time for that. Because come January, there is much work to be done. By all of us.
Tuesday, November 04, 2008
Monday, November 03, 2008
Not that I'm superstitious or anything ...
For those of us who are being ridiculed for being nervous about the election:
Garry Trudeau, I admire your moxie, but um ... wouldja mind going outside, turning around three times and spitting? Curse, too. Thankya.
Garry Trudeau, I admire your moxie, but um ... wouldja mind going outside, turning around three times and spitting? Curse, too. Thankya.
Friday, October 31, 2008
Thursday, October 30, 2008
This morning, a woman with a gentle face popped her head around our door and asked if I was LW's mom. When I said yes, she said that she has a daughter just LW's age and they just got here.
Really just got here. Her daughter gets a biopsy today. It sounds like Wilms' Tumor, bilateral, like LW's was at first diagnosis.
This mom is holding it together -- not like me, I was just a puddle when we first came. But I recognized her eyes, because there were my eyes back then. They are filled with fear. They show that her head is swimming, she is overwhelmed.
We met up in the playroom and as our girls played, we talked. I gave her bits and pieces of information. I know she'll remember little of it, but she gave me her email address. I told her about setting up a caringbridge site, I told her that the McDonald's here is open til 3 am.
And I told her, "You will get through this."
She works at the post office, she doesn't know if she'll need to quit her job. They don't live in the city, they're in a small town near here.
She is at the beginning. You know how on tv, or in movies, something happens and a person goes hurtling back in time? That's actually what it feels like. Huh. Sitting there, it was as if a big whoosh swept me back to that first of many hospital rooms. I didn't even know we were on the oncology floor. The Husband knew and was furious. She hadn't even been formally diagnosed.
How innocent, how raw we were.
I was glad that I was here to talk to this mother. Glad we exchanged info so I can "mentor" her through this world. I wanted to say, "This world, it's not as bad as you think." In some ways, that's true. Going to clinic, even coming to the hospital, becomes normal. And in other ways, it is far, far worse than she yet knows.
I was thinking about initial diagnosis versus relapse-diagnosis the other day. Initial diagnosis is a more dramatic change. In 24 hours, not only does your life change, YOU change. You are now a cancer parent. And your child changes. She's still your funny baby, but she is also now a cancer kid. You can run, you can hide, but you can't escape. You will never be the same. Your innocence is ripped away.
In some ways, though, relapse diagnosis was more painful. Initial diagnosis was heartrending, but there was a certain level of protection provided by shock and provided by ignorance.
Relapse diagnosis was the most excruciating pain I've ever experienced. Because there was absolutely no numbness. No swirling cloud of being overwhelmed. This time, I knew. I knew what it meant, I knew the world. I remember sitting on the cold floor of the hospital bathroom, holding two towels up to my face and screaming into them.
I didn't know how I was going to survive the night.
But the morning came. Joy did not come on that morning, but somehow, when the sun rose, it gave me the ability to deal with it all. I dried my eyes, did my research, listened to doctors, made some calls.
And now ... the grainy edges of the past recede and I am back here, in our hospital room. LW is taking a nap, dressed in her pumpkin costume. Tonight, she'll get her last chemo treatment.
Her Last Chemo Treatment. Oh, God, please God please God. Please, may this really, truly be the last.
Tomorrow, we'll finish flushing the liquids, get the neulasta shot and go home, hopefully in time to go trick or treating.
It breaks my heart that as we leave, another will take our place.
Really just got here. Her daughter gets a biopsy today. It sounds like Wilms' Tumor, bilateral, like LW's was at first diagnosis.
This mom is holding it together -- not like me, I was just a puddle when we first came. But I recognized her eyes, because there were my eyes back then. They are filled with fear. They show that her head is swimming, she is overwhelmed.
We met up in the playroom and as our girls played, we talked. I gave her bits and pieces of information. I know she'll remember little of it, but she gave me her email address. I told her about setting up a caringbridge site, I told her that the McDonald's here is open til 3 am.
And I told her, "You will get through this."
She works at the post office, she doesn't know if she'll need to quit her job. They don't live in the city, they're in a small town near here.
She is at the beginning. You know how on tv, or in movies, something happens and a person goes hurtling back in time? That's actually what it feels like. Huh. Sitting there, it was as if a big whoosh swept me back to that first of many hospital rooms. I didn't even know we were on the oncology floor. The Husband knew and was furious. She hadn't even been formally diagnosed.
How innocent, how raw we were.
I was glad that I was here to talk to this mother. Glad we exchanged info so I can "mentor" her through this world. I wanted to say, "This world, it's not as bad as you think." In some ways, that's true. Going to clinic, even coming to the hospital, becomes normal. And in other ways, it is far, far worse than she yet knows.
I was thinking about initial diagnosis versus relapse-diagnosis the other day. Initial diagnosis is a more dramatic change. In 24 hours, not only does your life change, YOU change. You are now a cancer parent. And your child changes. She's still your funny baby, but she is also now a cancer kid. You can run, you can hide, but you can't escape. You will never be the same. Your innocence is ripped away.
In some ways, though, relapse diagnosis was more painful. Initial diagnosis was heartrending, but there was a certain level of protection provided by shock and provided by ignorance.
Relapse diagnosis was the most excruciating pain I've ever experienced. Because there was absolutely no numbness. No swirling cloud of being overwhelmed. This time, I knew. I knew what it meant, I knew the world. I remember sitting on the cold floor of the hospital bathroom, holding two towels up to my face and screaming into them.
I didn't know how I was going to survive the night.
But the morning came. Joy did not come on that morning, but somehow, when the sun rose, it gave me the ability to deal with it all. I dried my eyes, did my research, listened to doctors, made some calls.
And now ... the grainy edges of the past recede and I am back here, in our hospital room. LW is taking a nap, dressed in her pumpkin costume. Tonight, she'll get her last chemo treatment.
Her Last Chemo Treatment. Oh, God, please God please God. Please, may this really, truly be the last.
Tomorrow, we'll finish flushing the liquids, get the neulasta shot and go home, hopefully in time to go trick or treating.
It breaks my heart that as we leave, another will take our place.
Wednesday, October 29, 2008
Halloween in a Children's Hospital
... is not bad.Little Warrior's counts were good and a room was available, so we checked in yesterday. We should be able to leave at 4 on Friday, which means we'll get home for trick or treating, which doesn't start in our neighborhood til it gets dark.
We have tons of costumes at home, the result of having four children and me going through a garage sale-ing phase when the first was a baby and buying up every costume I saw that was $3 or cheaper.
Financial tip: tons and tons of costumes fit into that category. Come spring, people just want to get rid of costumes. Even the homemade ones.
I'm pretty sure that the one she is wearing today was lovingly homemade. Not by me, of course. (Shudders.)
Back to my point ... we have lots of costumes, so I told LW she could bring 3 costumes to the hospital. Today is clown day, and you'd better believe that we attract boatloads and oohs and aahs. And by "we," I mean, "she," which is just fine with "me." Invisibility is a good look for me these days.
Anyway, first we went up to the hospital library. A school evidently had a pumpkin decorating contest, where they decorated craft pumpkins like book characters. Everyone who goes in the library is urged to pick one out. LW chose one decorated like Knuffle Bunny. Then we got back to our room and discovered LW's favorite Child Life specialist had left one decorated like A Bad Case of Stripes.
Lunchtime. I grabbed a sandwich out of our mini-fridge and LW and I went down to the Ronald McDonald family room to heat it up. Hey, we're just in time for a party! Some cute high-school girls were there, in costume, with treat buckets, sandwiches and face painting. They painted up LW and oohed and ahhed over her. I tried not to get too misty. I'm always touched at people -- complete strangers -- coming over just to brighten up a sick kid's day. Plus, this being LW's last round of chemo, I'm just very sentimental. Oy.
After eating lunch and playing in the playroom, we're back in our room. LW has an interesting way of letting me know it's nap time. And by "interesting," I mean "exasperating." She gets really really naughty and really really obstinate. I swear, you can actually see the horns pop out of her head. Which is an interesting look with a clown outfit. Now I'm really going to have nightmares about clowns eating me.
She's settling down and some nice ladies from an Optimists club come by with a little pillow for LW. People love to give cancer kids pillows and blankets. I think we have enough to furnish a couple of bedrooms. No disrespect intended.
But while I'm teetering on the edge of ungratefulness, let me mention that if you're making up treat buckets or bags for kids, make sure there's some toddler-safe candy in there. LW got a bucket full of gumballs, double bubble, jawbreakers and Now-and-Laters.
Hmm. I was a much nicer person when I began this post. Maybe I need a nap, too.
Monday, October 27, 2008
The Last Night Before
I can't sleep.
This isn't unusual, and when it is the night before going into the hospital, it's a given. But tonight, rather than being awake because of sadness that we're going in, or stress that I haven't packed the right things or worry that I'm forgetting something that needs to be taken care of here at home ... rather than any of that kind of wakefulness, it is a different sort.
Excitement. Happy excitement.
Tomorrow is Little Warrior's last scheduled chemo hospitalization.
(Didja notice how I put in that word "scheduled" as kind of a mitigating sort of thing, so that I wouldn't have to go through the whole list of my superstitious ramblings, in fear of setting off some kind of bad luck? Ah what the hell ...)
PLEASE GOD, KNOCK WOOD, THANKYEWJESUS!
Now, there are certainly things that could change this, like if her counts suddenly nosedived, or they don't have a room, or ... well, that last "or" is one we don't want to think about, isn't it?
But hopefully, all will be well. Her counts will be up, a room will be available ...
And cancer will be over.
Little Warrior has been talking about this, nearly since we started. "On Halloween, cancer will be over."
If all goes well, we'll get out of the hospital on Friday. Halloween.
This week, my dad looked at her, running around like your average jet-propelled 3 year old and said, "You know, maybe we should just believe her. On Halloween, cancer will be over."
I have had the occasion recently of worrying about the baby of one of my blogfriends. Her situation is different from mine; I can offer no wisdom, no tips, only, "I am thinking of you."
So you see, I've had a taste of what you have had. For six months now, you have cared. And 2 years before that.
Thank you. I know how your heart can hurt for someone you've never actually met.
I know that even in the absolute best case scenario, nothing will be clean cut. I will not come home, unpack the bags I've been hauling for 6 months, have a good shake, and get back to normal life.
There are things to be processed. Questions to be answered. Little Warrior's immune system won't be up to snuff for about a month. I know it will take my emotional immunity longer to regain its strength.
LW has scans the week before Thanksgiving. Her first "off-treatment" scans. And if those are clear, then every 3 months.
But now, tonight, I am allowing myself to be hopeful.
Still and all, though ... I really need to get to sleep.
This isn't unusual, and when it is the night before going into the hospital, it's a given. But tonight, rather than being awake because of sadness that we're going in, or stress that I haven't packed the right things or worry that I'm forgetting something that needs to be taken care of here at home ... rather than any of that kind of wakefulness, it is a different sort.
Excitement. Happy excitement.
Tomorrow is Little Warrior's last scheduled chemo hospitalization.
(Didja notice how I put in that word "scheduled" as kind of a mitigating sort of thing, so that I wouldn't have to go through the whole list of my superstitious ramblings, in fear of setting off some kind of bad luck? Ah what the hell ...)
PLEASE GOD, KNOCK WOOD, THANKYEWJESUS!
Now, there are certainly things that could change this, like if her counts suddenly nosedived, or they don't have a room, or ... well, that last "or" is one we don't want to think about, isn't it?
But hopefully, all will be well. Her counts will be up, a room will be available ...
And cancer will be over.
Little Warrior has been talking about this, nearly since we started. "On Halloween, cancer will be over."
If all goes well, we'll get out of the hospital on Friday. Halloween.
This week, my dad looked at her, running around like your average jet-propelled 3 year old and said, "You know, maybe we should just believe her. On Halloween, cancer will be over."
I have had the occasion recently of worrying about the baby of one of my blogfriends. Her situation is different from mine; I can offer no wisdom, no tips, only, "I am thinking of you."
So you see, I've had a taste of what you have had. For six months now, you have cared. And 2 years before that.
Thank you. I know how your heart can hurt for someone you've never actually met.
I know that even in the absolute best case scenario, nothing will be clean cut. I will not come home, unpack the bags I've been hauling for 6 months, have a good shake, and get back to normal life.
There are things to be processed. Questions to be answered. Little Warrior's immune system won't be up to snuff for about a month. I know it will take my emotional immunity longer to regain its strength.
LW has scans the week before Thanksgiving. Her first "off-treatment" scans. And if those are clear, then every 3 months.
But now, tonight, I am allowing myself to be hopeful.
Still and all, though ... I really need to get to sleep.
Sunday, October 26, 2008
The Boy and Barack Obama
I mentioned, below, that The Boy is gaga over Obama. Let me expand on that.
I guess it was about last February that he saw a speech of Obama. He was entranced. Here, he was watching someone who talked about things that he believed in. Someone who acted as if people can do great things together.
He began reading everything he could get his hands on about Obama, watching the political shows, and asking every adult their opinions.
He has so been lit on fire that he has decided that when he grows up, he wants to be president. Perhaps that's not that unusual. Except that at 12, he has decided that he is going to go to a good college, get a degree in Accounting, go to law school, be a lawyer for several years, then go into politics. He has seriously discussed with me whether having a UU minister for a mother will make his run for the presidency difficult.
After watching some of the things both candidates have had to deal with, he's decided that the easiest thing is for him to just live a life on the straight and narrow. No drugs, no sex shenanigans.
This is the effect Sen. Barack Obama has had on my son.
Will this last? Heck if I know. At 12, I wanted to be a country singer. But it's fun to watch. And what a concept -- a politician as hero to a 12 year old boy!
And he's already started on his plan. He competes in his first debate tournament next month.
I guess it was about last February that he saw a speech of Obama. He was entranced. Here, he was watching someone who talked about things that he believed in. Someone who acted as if people can do great things together.
He began reading everything he could get his hands on about Obama, watching the political shows, and asking every adult their opinions.
He has so been lit on fire that he has decided that when he grows up, he wants to be president. Perhaps that's not that unusual. Except that at 12, he has decided that he is going to go to a good college, get a degree in Accounting, go to law school, be a lawyer for several years, then go into politics. He has seriously discussed with me whether having a UU minister for a mother will make his run for the presidency difficult.
After watching some of the things both candidates have had to deal with, he's decided that the easiest thing is for him to just live a life on the straight and narrow. No drugs, no sex shenanigans.
This is the effect Sen. Barack Obama has had on my son.
Will this last? Heck if I know. At 12, I wanted to be a country singer. But it's fun to watch. And what a concept -- a politician as hero to a 12 year old boy!
And he's already started on his plan. He competes in his first debate tournament next month.
Saturday, October 25, 2008
The mark of a great DRE
The BFF-DRE is in Albuquerque, along with a gaggle of other Unitarian Universalist Directors of Religious Education. She went to Barack Obama's rally. She called me.
Well, of course. I'm her best friend, right?
She immediately ... asked if The Boy (12) were still awake. I handed him the phone. She held her phone up for the duration of the speech, so that he could hear it, "live."
He is ecstatic. After the speech, he literally danced around the room.
And that, my friends, is the mark of a great DRE.
Edit: To clarify, The BFF-DRE was not attempting to influence the next generation's political beliefs. The Boy is super gaga over Obama, so much so that ... wait, that'll be a whole post in itself.
Well, of course. I'm her best friend, right?
She immediately ... asked if The Boy (12) were still awake. I handed him the phone. She held her phone up for the duration of the speech, so that he could hear it, "live."
He is ecstatic. After the speech, he literally danced around the room.
And that, my friends, is the mark of a great DRE.
Edit: To clarify, The BFF-DRE was not attempting to influence the next generation's political beliefs. The Boy is super gaga over Obama, so much so that ... wait, that'll be a whole post in itself.
Friday, October 24, 2008
Yes Day
My father called me a few days ago and announced that he and my mom needed to have a "Yes Day" with Little Warrior. So yesterday morning, hat on head, carrying a little backpack and a big tote bag, she was delivered to their home away from home during All of This, their RV.
I started "Yes Day" at my house a few weeks ago. LW hears "No" so much. No, you can't go to the store. No, you can't play with other kids. No, no, no. Take this yucky medicine. Stick out your finger to get it pricked.
So on one day where she didn't have any meds scheduled and no visits to the doctor, I said, "Today is Yes Day. Unless there's a really, really, really, good reason, I will say Yes to whatever you ask for."
We read a lot of books that day. Hard to complain.
A few days later, she spent part of the day with her grandparents. "It was Yes Day with Bubbe and Pops," she informed me later. "Is every day with them 'Yes Day'?" I asked her. She grinned and nodded.
My parents loved that. My strict, non-indulgent parents ... well, they disappeared a few years ago, to be replaced with these two marshmallows bobbing in a sea of warm grandparently chocolately goodness.
So, yesterday, she had a day of Nuttin' But Love. My dad even went to McDonald's, an unfamiliar territory, and bought her a cheeseburger for lunch. Unfortunately, he's not down with the world of Happy Meals, and in his effort to get the smallest burger, he got her a homestyle burger, which was unfamiliar, and remained uneaten. (But OMG, what a great story, hearing about my clueless dad asking for guidance from the oblivious counter guy.)
Cheeseburgers and jelly sandwiches and playing "store" with Bubbe's pocket change and then climbing into their bed for a long, long nap. For some reason, the kid that never wants to sleep at home absolutely loves sleeping in their trailer.
Everyone deserves a Yes Day.
I started "Yes Day" at my house a few weeks ago. LW hears "No" so much. No, you can't go to the store. No, you can't play with other kids. No, no, no. Take this yucky medicine. Stick out your finger to get it pricked.
So on one day where she didn't have any meds scheduled and no visits to the doctor, I said, "Today is Yes Day. Unless there's a really, really, really, good reason, I will say Yes to whatever you ask for."
We read a lot of books that day. Hard to complain.
A few days later, she spent part of the day with her grandparents. "It was Yes Day with Bubbe and Pops," she informed me later. "Is every day with them 'Yes Day'?" I asked her. She grinned and nodded.
My parents loved that. My strict, non-indulgent parents ... well, they disappeared a few years ago, to be replaced with these two marshmallows bobbing in a sea of warm grandparently chocolately goodness.
So, yesterday, she had a day of Nuttin' But Love. My dad even went to McDonald's, an unfamiliar territory, and bought her a cheeseburger for lunch. Unfortunately, he's not down with the world of Happy Meals, and in his effort to get the smallest burger, he got her a homestyle burger, which was unfamiliar, and remained uneaten. (But OMG, what a great story, hearing about my clueless dad asking for guidance from the oblivious counter guy.)
Cheeseburgers and jelly sandwiches and playing "store" with Bubbe's pocket change and then climbing into their bed for a long, long nap. For some reason, the kid that never wants to sleep at home absolutely loves sleeping in their trailer.
Everyone deserves a Yes Day.
Wednesday, October 22, 2008
Shake shake shake, Senora
FLAPPITY-FLAP-FLAP-FLAPPITY-FLAP-FLAP-FLAP-FLAP!
(The sound of Lizard Eater shaking it off.)
Cancer has stolen enough from me and my family. It's *&!! not going to steal our Halloweentime.
Happy Samhain and a Happy Haunting to Ye. I'm off to make my list ... spiderwebs, silly string, candy ...
(The sound of Lizard Eater shaking it off.)
Cancer has stolen enough from me and my family. It's *&!! not going to steal our Halloweentime.
Happy Samhain and a Happy Haunting to Ye. I'm off to make my list ... spiderwebs, silly string, candy ...
Tuesday, October 21, 2008
Trusting the Universe
A friend and I were talking about the end of LW's treatment. I explained that I was more nervous about being off-treatment than on. Once chemo ends, what's going to happen? She said, "oh, so you're just going to have to trust the universe."
Eh?
No, no. I explained that I don't trust the universe. I mean, it's not any kind of antagonism, it's just a neutral thing. How can I "trust the universe" when I have so many friends who are in excruciating pain because their child has died? Um, sorry, but trust in one hand, spit in the other, see which fills up faster ...
It's the same as those with great faith in a sentient God who say, "Trust in God," "Trust in Jesus," etc. I just cock my head at that ... I don't understand. Many children die every day. God doesn't keep that from happening.
I'm sure they'd say something then like, "If that happens, it's because God (or the universe) has a plan."
And at that point, I try not to roll my eyes.
I don't trust in the universe; I don't really understand the concept. Along with "everything happens for a reason," and "cancer parents are special," that idea left me the day we were told, "Your daughter has a tumor." The first time.
Glad for those who draw comfort from the idea that it does, but for me, um, no. Especially not today, when I find out that in another one of our Wilms' families, a family whose child really has been a miracle -- and I don't say that generically, this is a child who was not expected to make it through one night and he survived that, but is still fighting cancer -- in this family, a family of tremendous faith, Mom just was diagnosed with her own, very serious, cancer.
I have another friend whose child is fighting cancer at the same time my friend's father is fighting cancer. Talk about the sandwich generation.
So, no, when LW goes off chemo, I won't just calmly trust the universe.
I will do as I did last time ... try to live fully between the scans that will come every three months. If I'm lucky, and capable, I'll do okay for most of the time, just losing my mind during the week before each scan.
And if I'm very lucky, that scan will show that I get to do the same for 3 more months. Until the next scan.
Eh?
No, no. I explained that I don't trust the universe. I mean, it's not any kind of antagonism, it's just a neutral thing. How can I "trust the universe" when I have so many friends who are in excruciating pain because their child has died? Um, sorry, but trust in one hand, spit in the other, see which fills up faster ...
It's the same as those with great faith in a sentient God who say, "Trust in God," "Trust in Jesus," etc. I just cock my head at that ... I don't understand. Many children die every day. God doesn't keep that from happening.
I'm sure they'd say something then like, "If that happens, it's because God (or the universe) has a plan."
And at that point, I try not to roll my eyes.
I don't trust in the universe; I don't really understand the concept. Along with "everything happens for a reason," and "cancer parents are special," that idea left me the day we were told, "Your daughter has a tumor." The first time.
Glad for those who draw comfort from the idea that it does, but for me, um, no. Especially not today, when I find out that in another one of our Wilms' families, a family whose child really has been a miracle -- and I don't say that generically, this is a child who was not expected to make it through one night and he survived that, but is still fighting cancer -- in this family, a family of tremendous faith, Mom just was diagnosed with her own, very serious, cancer.
I have another friend whose child is fighting cancer at the same time my friend's father is fighting cancer. Talk about the sandwich generation.
So, no, when LW goes off chemo, I won't just calmly trust the universe.
I will do as I did last time ... try to live fully between the scans that will come every three months. If I'm lucky, and capable, I'll do okay for most of the time, just losing my mind during the week before each scan.
And if I'm very lucky, that scan will show that I get to do the same for 3 more months. Until the next scan.
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