"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.

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.

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.

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.)

It's a New Day

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.

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.

The Tide is Turning

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.

And we want it.

Happy Halloween. Cancer is over.*





*PleaseGodKnockWoodThankYewJeeeesus.

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.

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.

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.

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.

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.

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.

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 ...

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.

No Comment

I'm tired of feeling scared.

I'm tired of being so effing fragile that the least little thing makes me cry.

I'm tired of losing my temper over small things.

I'm tired of feeling helpless.

I'm tired of weeping.

Tired of crying.

Tired of sobbing.

Tired of holding it in.

Tired of my heart hurting hurting hurting.

We're at the end of it and I'm so full of fear that we're not at the end of it, that this is just another pause before it all starts all over again. Again.

I want ... just once! ... to look at her sleeping and just think, "Awwwww," rather than

"Please God Please God Please God Please God."

I'm tired of being a drain on my friends, my family. Doesn't the universe understand that I'm supposed to be the comforter, not the comforted???

I'm tired of feeling self-centered and self-focused and self-ish.

I'm tired of feeling guilty for not being more appreciative, more thankful.

I just feel so fragile. And it's unfamiliar. And I hate it.

And I'm tired of having to stay up late at night because the only way I can go to sleep is if I push myself to complete exhaustion.

So tired ... but I can't sleep, the clowns will eat me.

FYI, Re: St. Judes

Just a little detail ... because until I entered Childhood Cancer Land, I didn't know:

St. Jude Research Hospital is not a "when no one else can treat you, come here," hospital. It is an amazing research hospital, but it is a research hospital.

What this means: if your child has relapsed for the second time, as is the case with a friend of mine, and all of your doctors are saying, "Err, we don't know what to do," the only way you're going to St. Jude is if they happen to have a study open that your child qualifies for.

Great hospital, not disputing that. But still and all, my money goes to Curesearch. (And Make-a-Wish and Candlelighters.)

I really really hate this effing disease.

Normal wish

The Husband is working from home today. Despite injunctions to "Pretend Daddy isn't really here," she just interrupted his work with a question. It was a very important question, you see.

"When cancer is over, can we go to the park?"

Everybody's Doing It ...

The Deist is. And Lazy Buddhist. And the BFF-DRE.

So ... okay. After putting up with (she says with a grin) the BFF-DRE sweating and stressing and drinking far too much Starbucks every November, I'm going to do it, too. Nanowrimo.

Little Warrior is supposed to end treatment on October 31. Perfect timing, that?

I will tell her story. No, that's not true. Only she can tell her story. I will tell my story, about her journey.

It is not about telling a story, or writing a novel. It's about dumping, dumping, dumping, all that has been inside me for the past 3 years. So that I can slow down the constant processing of it all. So that I can make some room in there for my others kids, and my husband, and oh yeah, me.

This might be the best therapy I can get.

Have a Beer, Save a Child

It's a strange world we live in, guys.

If you buy specially packaged Huggies diapers or Campbell's chicken noodle soup or even a pink ribboned Barbie, for cripes sake, some of the money goes towards the breast cancer cause.

There t'ain't much like that for childhood cancer ... but this month, if you go in a convenience store, you may see pumpkins from Coors up on the walls. That's because they're partnering with St. Jude's in this fundraiser.

Huh. Well, you know, a cold beer would be nice ...

Three Different Detergents

There are three different detergents in my laundry room. Tide, because that's what we use, Unscented ALL concentrate, because that's what my environmentalist sister-in-law bought when she was here, and Arm & Hammer, because my recently retired mother-in-law likes to be careful with the pennies.

I have no complaints ... I am not that wedded to laundry detergent. And the reason for the different kinds is because while I was in the hospital at different times, whoever was there washed our laundry. I'm grateful for their help. True, that.

But still and all ...

I'll be glad when there's just one kind of detergent in my laundry room.

True Story

Little Warrior is in my bathroom right now. She has climbed up the tub and onto the counter, where she can look in the mirror. She is looking at her eyes.

A few minutes ago, she was sitting in my lap. "Mommy, I can see myself through your eyes." Interestingly, she doesn't say, "I can see myself in your eyes." She says "through."

I use her phraseology ... "Yes, I can see myself through your eyes, too."

"I'm going to go look in the mirror." And off she trots.

She is back now. She shakes her head. "I can't see myself through your eyes in the mirror."

I pull her into my lap. "Nope. It only works when we're looking at each other."

She studies my face. "Okay," she says at last.

Obama good for African American talking heads?

I'm curious ... has anyone seen any analysis of whether Obama's campaign has been good for African American pundits?

It seems like -- especially on the Republican side -- that there are more African American faces on the tv, giving their spin to events.

Genuine question ... nuttin' snarky intended.

Edit: Okay, not just me ... New York Times wrote about it this past spring:

Like the Candidates, TV’s Political Pundits Show Signs of Diversity

A Long and Transcendental Roller Coaster Ride of Faith, Pain, and Love

I'm tapped out. I can't make adult conversation anymore.

So many different things this week ...

We went to Clinic on Tuesday, to be admitted to the hospital for a 6 day chemo. While there, at the suggestion of several of youse guys, I presented our Nurse Practitioner with a letter detailing our experience in the Emergency Room.

Apparently, this letter was shared in a big meeting, because over here in the hospital, both the hospital nurse practioner and a TPN nurse indicated that they'd heard it. So, it apparently got attention. That's good, and y'all were right to urge me to do it.

Tuesday night, watched the debate. And forget my former suggestion. I think, instead, that candidates should have to play the drinking game during the debate. By the end of the debate, they'll either have learned not to use canned terms, or they'll be falling down drunk. Either way, we win.

I'd been feeling pretty discouraged about church and ministry and the financial meltdown certainly didn't help that, the idea of spending thousands of dollars for seminary ...

... and then I had Wednesday.

In a weird convergence of the universe, I wound up having two HUGE conversations that include a lot about religion, with strangers -- a nurse and an art therapist. With them asking numerous questions about UU. Normally, I could go a year without that happening. Two in one day.

Both are fascinating women, with interesting life experiences. I am left with an old familiar feeling, that excitement I get -- People are so cool! I like people, with their different stories and different experiences. I'm not sure what it means, but suddenly, I can't wait to sign up for classes in the spring.

And the rest of the week ... up, down, up, down. Walking the halls, I pass a mother who has come out of her child's room looking frantic. "Is the priest here yet?" she asks the nurse.

Yes. What you think that means is what it means.

The BFF-DRE visits, bringing lamb beanie babies from her church. The three of us walk around the floor, knocking on doors and asking if there's anyone inside who would like a little lamb. LW holds up the beanie so they know we're not offering a gyro. It fills my heart, seeing how much LW loves giving these away. Even though I live in this world, I find myself on the edge of tears several times, like when she gives a lamb to a cute little pre-teen, who then offers her a set of sparkly bracelets. It's wonderful, and healing.

Last night, I get an email. A Wilms' family that we're close to has received bad news. The cancer has come back. This is the third time to face the beast. The doctor doesn't know what to do next.

And selfishly ... she did the same regimen that LW is on right now.

Today, we go down to the playroom. There is a group there from GE, helping patients make sock puppets, and serving a BBQ lunch. I am so touched that these people, these corporate folks, are giving up their Saturday for this.

LW has a good time, but mad when we have to go back to our room for chemo. Helping her onto her bed, she suddenly explodes with hurt and fury. I try to make out why. "What hurts, what's wrong?" She pulls herself together long enough to blurt out, "Cancer isn't OVER!!!"

Oh, babe.

She naps on me. The cool nurse from the other day is back. Her parents live in Galveston and just lost everything. Everything. Right after the storm, when they let folks back in, she had gone to help them clean out their house. A car pulled up to their driveway and a young man, just graduated from a school in Illinois, gets out. Joshua Perkins. She laughed and said he looked like Jesus -- kinda straggly hair, beard. He saw the news about Ike and felt compelled to come help. He only had $150 dollars, he said, but he stopped by his church and they gave him $500 for his expenses.

He said he came looking to help. M said that he worked his butt off for two days. He made miracles, cleaning up their yard, cleaning out their garage. They offered him meals. He politely said, No, he had a sandwich in his car. M offered him $100. He declined. She told him to take it to his church. No, he said, they had plenty of money. He said that if she was bound and determined to give it away, to give it to her neighbors. She did, in his honor.

Tomorrow, we get to go home. Only one more time after this, of packing up and going home.

Knock wood. Please God. ThankyoooJeeezus.

Who Wants Something Fun?

Don't you wish a music video's lyrics matched the video? Here you go -- "Literal" Take On Me ...

New Rule for Debates

"What's that game," I ask The Husband, "that one where you have a list of words you're not allowed to use?"

He doesn't remember ... I start to google it, then remember -- "Taboo."

"I think that in order to save the country from binge drinking, they should give all those debate-drinking-game terms ... my friends, maverick, middle class ... give those to the candidates like a Taboo card. And they have to go through the debate without using those words. If they use one of the terms, a loud buzzer sounds and they have to immediately shut up and pass to the other."

It'd probably be a really short debate.

Caregivers Needed

FYI ... if you have any church members or friends who are caregivers in a crisis situation -- taking care of a parent with Alzheimers, or taking care of a spouse who was in a car accident or, I dunno, taking care of a child with cancer ...

They have many needs. But the one need that they do not have?

"A need to feel needed."

I'm just sayin'.

--

* So, there is no need for you to come up with additional volunteer "opportunities" for them.

Cleanup in Aisle Four, Irv.

I just finished my day-before-hospital routine, doing the day-before-hospital shopping. There are three elements to this:

• Buy food for my family to eat while I'm gone.
• Buy food for me to eat in the hospital.
• (And then the hard part) Buy food that might possibly tempt Little Warrior once that chemo starts pumping. Fresh fruit? Junior mints? Sour candy? Nuts? It changes day to day, what will appeal to her.

So I trudge up and down the aisles, a neatly typed list for the first two, and a tendency to analyze every single item for the last. Hmm, halva? Japanese pickles?

Unlike normal grocery shopping, which I find kind of fun, this is stressful. I feel like there is a giant neon arrow above my head, "Her Child Has Cancer!" Of course, no one knows, or cares. I'm just another frumpy housewife, filling her basket with stuff.

My chest is tight and I tell myself, "Relax, Silly." My mother is home with LW, I'm in no rush, there's nothing that I *must* find. It's not like being in the grocery store the Wednesday before Thanksgiving, searching for the last can of cranberry jelly.

But I'm looking for that magical item that will make it all fun. My big fantasy is that LW will grow up and when talking about these hospital trips, will say, "You know, I just remember those being a party, Mom! We played games and had tea parties and ate yummy things."

No, that's not my big fantasy. That's my small fantasy.

LW will grow up. That's my big fantasy.

5 Things You Might Not Know About Me

Moxie wants to know 5 things people may not know about you. Here's mine:

1) I can wiggle my ears and my nose.

2) I just received my first payment for something (other than advertising copy) that I had written. Oddly, it wasn't a planned article. It began as an email and the editor wanted to turn it into an article.

3) My sophomore year, I ran for VP of the student council. I referenced this song. I ended my speech with: "I will lay it on the line for YOU!"

Note to earnest high schoolers: do not use the words, "lay," "balls," or "deep" in a campaign speech. You will be mocked. Severely.

I lost.

4) I lust to have a hidden room.

5) If you read a women's magazine in the 90s, you've probably read an ad I've written. Really purple prose about jewelry.

Alternative World

I want a world where there is no "spin alley," where a news station not only does not allow representatives from a candidate's campaign to speak on air, they don't even allow them in the building. And once you get a reputation for "spinning," you become persona non-grata and are treated the way a writer from The Globe (or whatever those "She's pregnant with an alien's baby") tabloids are called, would be treated in the White House press room.

That's the world I want.

Feeding our people

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

I just found out that a friend has left her Unitarian Universalist church to go to a Unity church. She still considers herself to be a UU, but her church couldn't give her what she needs.

This was striking to me because unlike mine, her church is large. Through my experience, I've seen that my church isn't equipped to help those members with a big need. I've sadly shrugged it off as "well, we're not big enough/not enough people/no knowledge/no minister" etc.

Well, in her case, her church is big enough, does have enough people, has two ministers ...

She went through a tough time, led by a seriously ill mother. After being the volunteer head of RE for five years, as well as doing countless other jobs, she needed a break, and she needed some nurturing.

"The only time anyone called," she said matter-of-factly, "was when they wanted me to do something."

Ouch.

I've tasted a little bit of that stew, alternating phone calls about Sunday services with phone calls from doctors, but thankfully, there was a call from someone at church "just to check on us," and even better, a note left on our door from the same person, right after the Hurricane with a phone number circled and "Let me know if you need anything!" scribbled on it.

I guess that's the message of hope I can give -- it doesn't actually take much. Just one person can make the difference between whether you feel that your church cares about you, or has forgotten you ... until they call to find out if you're going to help with canvass this year.

It's hard. Face it, there are churches that know how to do crisis. I know, because I hear about them from other cancer parents. Churches that leap into action, organizing benefits, setting up care schedules, putting those in need, as Rev. Marlin Lavanhar described in his sermon after his daughter died, in the very center of the community to take care of them.

My church doesn't have the time or know-how to do that. But I love them, and I have friends there who put food in my freezer, and met me for movies when I requested it. There is enough there to call me home.

That's the pastoral care issue. But then there's also the issue of religion.

A couple of days ago, Stephen of Reignite mentioned an episode of Desperate Housewives where Unitarians were mentioned. After all the tragedy she has been through, she has Big Questions. Stephen asks, "What if Lynette had gone to a Unitarian church? Would she have found what she was looking for?"

I imagine it would have depended on the church. For my friend, the answer was no. She wasn't hearing anything in the pulpit about the big questions. She felt that they did a good job challenging her, via community action, but she didn't feel fed.

Lacking a ministerial presence, after the first go-round with childhood cancer, I had an aching need to hear others ideas about those Big Questions. I am fortunate to be in a congregation that generally supports anything its members want to try, so I helped start some "Big Questions" covenant groups. I knew that in my fragile state, I needed some "space" to really hear people, with no arguing, so I formed one group as a "Deep Listening" group. No interruptions. No "discussion" per se. Speaking only from your own experience, and allowing a few breaths of silence after each person spoke. It was wonderful. Is wonderful. It FED me.

I don't have any real answers here. Part of the issue is letting people know what you need. The other part is whether they can do it or not.

Letting people know what you need is hard. We have every hope that we'll be done with all this at the end of October (knock wood, Please God ...) and will back to church in November. But in retrospect, and for your own edification in case you ever have a similar case in your church, here's my wish list:

a) I wish a Board Member had called me once we learned the cancer was back to say, "You are immediately released from all church responsibilities. Let's go over what you've been doing so I can make sure everything is covered."

b) Huh. Nope. "A" would have done it all.

p.s. In regards to "pastoral care" ... you guys have been awesome. You have comforted me on my blog, and your blogs have asked questions, provided answers, and nurtured my yearning for spiritual contemplation. I thank you, and honor you.

It's October

No, no need to run to your calendar, wondering if you'd missed a week or a few days. Let me rephrase it as, "It's October in my house."

I love October. I love the hint of fall, the decorations, the impetus to cook with pumpkin, the shows on tv, and of course, Halloween.

This will be the first time in my three daughters' lives that we haven't thrown a Halloween party. (Note: I would like on some of my posts from previous years about those parties, but eh, there's too many. If you want, just type in Halloween party in that search box up there.) The Boy has had one year without one -- we'd just moved to town and didn't know anyone.

Along with that, this weekend, I realized that Little Warrior and I are going to miss being at home for a third of October. 6 day hospitalization next week, then a four day, ending on Halloween.

So, in my position as O Exalted Queen of the Universe (at our house, anyway), I proclaimed that this past weekend began October. We got out the Halloween boxes. The party decorations are staying in the box for the year, but no fear, we have some nice little house geegaws. Happy little ghosts and jack o'lanterns smile at me from around the room.

It helps. I'm having a little bit of a hard day. I remember this happening after last scan, so I can just shrug and know that it'll pass. You worry so much about the scan, then you get the good news, and have that relief, and it feels good, but it's not something that permeates your being. Inside, you know that it just means they don't see anything. There are no guarantees. But its something. And even though it's a good something, you just kinda sink a little bit back into reality.

It'll pass. Meanwhile, as far as we're concerned, it's October.

You can't tell a Chinese Restaurant by its egg roll

OR ... Our E.R. scares me.

The conversation I expect to have in a couple of weeks with our genuinely Very Sweet Nurse Practitioner:

VSNP: I'm so sorry that you had to go to the ER. That's too bad. I hope the wait wasn't too long.
Me:

VSNP, I need to tell you this, because I need you to understand --

It's not about the wait. That's to be expected. It's about FEAR. I feel confident that most of your patients' parents who have taken their children to the ER at this hospital would echo my sentiments--taking our kids to this ER scares us to bits. If we judged this hospital by its ER, we would not come here.

Here is my experience: I drove into the parking garage here at 2:00 in the afternoon. I sprinted to the elevator with LW in my arms, but you know what the elevator situation is like ... when I got here, to the clinic, they said it was about 2:15. They called back and spoke to your nurses. They did not tell me to go to the ER, they said to wait. I waited. At 2:30, you and a nurse came out and said so sorry, but I didn't make it in time, so I needed to go to the ER.

In the ER, a couple of nurses came to our little room to access LW's port. They asked what size needle to use. Whaaaattt? This is not information given to parents. I held LW down while they put a needle in her port. They couldn't get a blood return. They removed the needle. They changed gloves, changed equipment. I held LW down again, her crying. They put another needle in. Still no blood return. There is a big bubble in the line, which, thankfully, they notice, so they decide not to push the saline. They remove the needle. My daughter is, understandably, more than a little upset. Finally, a third nurse comes in, an expert from the TPN department. She puts the third needle in through LW's skin into the port, as I hold her down, my heart crying as I whisper, "I'm sorry, I'm sorry" into her ear as she screams.

Instant blood return. I ask if it's slow. The TPN nurse wrinkles her forehead. "No, not at all." She looks at the ER nurses. They begin telling her that they think there was still contrast in LW's line from the day before. She asks why they think that. She looks dubious. She asks why I didn't just go through the clinic. I tell her that you said we were too late by 15 minutes. She shakes her head. She knows what the ER is like.

LW is hooked up to IV, her blood taken for testing, her standard Xray done. I take her to the bathoom a couple of times and it is filthy. I am afraid for her feet or more importantly, her IV line, to touch the floor. We are in the ER for 7 hours. The bathroom never gets cleaner.

At some point in the middle, the "doctor," (my guess is an intern) comes to give us the news that her counts are good enough for us to go home but um, erm, they screwed up and gave her the 8 hour antibiotic rather than the 24 hour antibiotic, and no, we can't go home and come back, and no, we aren't going to be admitted to a hospital room, but instead, we need to stay there til the 8 hour antibiotic runs its course, which will be around 1 am, then we'll get the 24 hour antibiotic, and when that's done, probably about 2 am, then we can drive home! Whoopie!

And it is at this point that I am thinking ... because we got to the desk at 2:15, rather than 2:00, we will be here until 2 in the morning.

And I am further thinking ... I think I would feel safer being treated by the doctors at (the local hospital for indigents).

We got lucky, if that's what you want to call it, because the ER actually called the doctors who do hematology/oncology and told them of their nefarious plan and the hem/onc doctors, God love 'em, said, No, just go ahead and give her to 24 hour antibiotic now.

(They've been pumping her full of chemicals for 6 months that could fell a cow, what's a bit of extra antibiotic?)

And that is why, VSNP, that is why you saw me look quite upset when you said that we were too late for triage, and had to go to ER. It wasn't because I was worried about the wait and being bored. Bored? Ha! It was because I was worried about the level of excitement I would be under, a fear that, once again, proved to be true.

15 minutes. Well ...

NO CUPCAKES FOR YOU!!!

Great News from a not-so-fabulous place

We're in the E.R. Little Warrior has a fever.

That's the bad news.

Her scan results came back. CLEAR. Her echocardiogram: NORMAL.

So that's the great news.

Scan-xiety

I am suffering from scan-xiety, a condition well-understood by other cancer parents and patients. Little Warrior has been fighting a solid tumor cancer, and as such, there's no blood test to see if cancer has come back. You just gotta use your two little ole eyes, heavily supplemented with by a CT scan or MRI.

For LW, it's a CT scan that encompasses her kidneys, abdominal area, and lungs. Wilms' recurred in one of her kidneys. The other common place is mets to the lungs.

So, of course, today she is coughing and telling me that her sides hurt.

The cough at least has a runny nose attached to it, so I can somewhat reasonably put my hands over my ears and say, "Nah-nah-nah" to that worry. Which doesn't mean she's clean, but I have other things to worry about, namely ...

"My sides hurt!" she whines. I ask her where. She puts her two little hands over her kidneys.

It could be gas. I could be the neulasta is kicking in and bone pain from her ribs makes her think her sides are hurting.

Or.

Well, tomorrow is scans. Tomorrow morning, we'll get up, no food or drink, go to the med center, she'll drink 3 glasses of really nasty contrast, we'll go to the hem-onc floor for a blood test to see how her counts are, then we'll go have an echocardiogram to see if the doxorubicin has hurt her heart.

Luckily, I don't have to take an echocardiogram tomorrow.

Hurricane Ike, Pt. 5

Wednesday
The Husband climbs back into bed at 7:00 am. There is a grocery store about 15 miles away that is up and working. He was there at 6 am and manages to get 8 bags of ice. When he tells me, I am as pleased as a pioneer wife probably was when her man brought home a fat deer. My husband, the ice hunter.

He also got another gallon of milk. This one we can put back on the ice after breakfast.

We have heard rumors that a garbage truck will come today. It won’t get any of the yard trash, but it will pick up all of the “household” trash. The Husband carries all our garbage out to the curb while I take a deep breath, and wade into the big freezer. First, I take a picture. Then, The Husband, done with the garbage, begins making a list of all the things we throw away, for insurance purposes. New Mexico chiles, mole enchiladas, homemade stock, soup … I don’t cry, but I’m sad. Less from the monetary and more from all of the labor I am throwing away. I like to make things and freeze them to eat later, like a farmer’s wife with her larder of canned vegetables and fruits. And our friends have brought us food for while LW is in treatment. I console myself that we’ve eaten most of these gifts.

A few things, like whole chickens, are still frozen solid. We keep those. Some are partially thawed, I put those in a cooler to cook today. We throw away 2 ½ large black bags of sausages, jambalaya, onigiri, and more.

I begin cooking. First thing, 5 lbs of seasoned chicken thighs. I have 10 more lbs of the same; they were on sale recently. I cool them, and mix with garlic that I roasted on the grill yesterday, mayonnaise from an unopened jar, chopped pickles. I can take some of this to the hospital with me tomorrow for my meals, and can leave some for the kids. I am overwhelmingly grateful for the ice we have.

Two bags of New York Times cookie dough balls, that had been carefully made, even more carefully “aged” for the requisite 36 hours. Heartbreaking to throw them away. Hmmm …

I turn off 2 of the three burners on the bbq grill, spread the area over them with foil and then parchment paper, and lay out some of the cookie dough spheres. I close the lid, checking it 15 minutes later. This can’t work, I know. I open the lid.

Looks like cookies to me.

I cook them a little longer, then let them cool. They’re warm and delicious. I cook up another batch, then go door to door to my neighbors, “Cookie Delivery!” They’re pleased to get big warm chocolate chip cookies.

Face it, if you have a sweet tooth, I’m a good person to Hurricane with. We’re all going to be 10 lbs heavier by the time the electricity comes back.

More cooking, like boiling up a whole lot of shrimp. And making burgers. I chop up the chicken and make chicken salad (with fresh-bought mayo) to take to the hospital.

The Hospital. Oh yeah. Last week, we were on our way to the hospital and we got a phone call saying, “Turn around and go back home.” Hurricane Ike has postponed LW’s chemo by a week.

In the dark, I pack. There’s not much to pack. Most of the bags I just left in the car from the previous week. No matter how tempted by the clean underwear, I stayed away, so that I could have clean good clothes at the hospital.

Tomorrow, I will have tv, wifi, air conditioning. For once, my family is envious of LW and I as we plan to go. For us, the hurricane is over.

Well … Hurricane Ike, anyway.

Hurricane Ike, Pt. 4

Tuesday

The husband got up and got to the grocery store right when it opened, because he’d been told by a store employee if he got there at 8 am, he could get ice.

Two problems: 1) the store opens at 6 am and 2) the icemaker is broken and only makes one bag of ice every 15 minutes.

He did, however, score a gallon of milk. With no way to store it, we again get the children to drink their fill, then make cocoa with the rest of it to store in hot thermoses for later.

We pick up around the house, just trying to keep the internal chaos at bay. There is chicken breasts marinated in pineapple juice in the freezer that have mostly thawed. I cook them for lunch. They’re delicious.

In the afternoon, a neighbor comes to invite us to a cul de sac barbeque that night. I remember the 3 dozen dark chocolate with salted caramel filling cupcakes in the big freezer and give up my hopes of taking those to the hospital. There’s no way they can make it til Thursday. They’ll be our contribution to the “party.” Besides, it’s time to face the music and open the big freezer.

I’d had hopes that the freezer would still be mostly frozen, as we hadn’t opened it at all, and it had been chock full. Wrong-o. Already, several bags of homemade stock are completely thawed. I remove them, remove the cupcakes, ascertain that some of the other stuff was still frozen, and close the door. I’ll deal with it tomorrow.

Two of our neighbors have pulled their grills out to the curb and are cooking away. Grilled steak, grilled porkchops, ribs … eat your fill. After answering the question, “How did you make cupcakes???”, the cupcakes are enjoyed all around, even by my skinny, perfectly polished neighbor. (Who is also perfectly sweet.)

It is just a little darker than dusk and kids are throwing a football around. No surprise, the football goes afoul and crashes down in my lap, tossing my wine on me. The bugs are biting me through the bug spray, so I scoop up Little Warrior and head in.

Hurricane Ike, Pt. 3

Monday
I wake up early, as I will every day this week. A cool breeze wafts over me from the window. Little Warrior has climbed into bed between us during the night. She cuddles her body into mine as the breeze touches her.

Things are beginning to get warm in the refrigerator and thaw in the little freezer below. We give the children cereal and milk, urging them to drink up. I take the rest of the milk and make cocoa, putting it in thermoses for the evening.

The day is pleasant. The cool front has come in. During “normal life,” this would be the day I’d get excited, filled with that autumn feeling. It still thrills me, but this time, because the cool front is our air conditioner. I open the windows that have intact screens, giving dirty looks to both myself and The Husband for not replacing the torn screens already.

We make sandwiches with cold cuts and cheese. What we don’t eat, we throw away, since the ice is melting and we don’t know when we’ll get more.

I have a bag of shrimp that has partially thawed and cream cheese from the fridge. And cream. We have a gas stovetop and I make a sumptuous dinner of shrimp alfredo over penne. We eat out on our deck, staying carefully away from where a thick tree branch drove through one of the boards. While the family is finishing up dinner, I make dessert inside. I mix up a cake mix with some of the softened butter, buttermilk and eggs from the refrigerator. I pour it in a non-stick saucepan, cover it, and cook it on low on the stove. When it’s “baked” up, I drizzle on some of the various sauces we’d had in the fridge – caramel, fudge. Everyone is very impressed that I made a cake and I feel proud of this small triumph.

When we come in, the house is dark. The Husband and MIL promise to clean the kitchen in the morning. It really would be impossible to do it by flashlight.

We read more of Little House on the Prairie and go to bed. The children all want to sleep in the living room in front of the open window. Since they can’t turn on lights, I think it’s more about wanting to be together than the cool night air.

Top Ten Reasons Hurricane Season Is Like Christmas

I'm sitting in the hospital, reading that our electricity isn't scheduled to come on til after next Thursday, and hearing that Bernanke made the faces of all the congresspeople turn white because complete financial breakdown could be imminent, and I'm kinda feeling like I'm living The Day After and I got this email from a friend, so ...

Let's take a Humor Break, shall we?

Top Ten Reasons Hurricane Season Is Like Christmas
Number Ten:
Decorating the house (even if it is with plywood).

Number Nine:
Dragging out boxes that haven’t been used since last season.

Number Eight:
Last minute shopping in crowded stores.

Number Seven:
Regular TV shows pre-empted for ‘Specials’.

Number Six:
Family coming to stay with you.

Number Five:
Family and friends from out of state calling you.

Number Four:
Buying food you don’t normally buy . . . and in large quantities.

Number Three:
Days off from work.

Number Two:
Candles.

And the Number One reason Hurricane Season is like Christmas:

At some point you’re probably going to have a tree in your house!

Hurricane Ike, Pt. 2

Sunday
The rain is even heavier today. Our cul de sac fills up, waves lap across it, crashing on our yards.

It is hot. They say a cold front is on the way; that’s what caused this rain, not the hurricane.

The rain stops midday. MIL, The Husband, The Boy and I go outside to begin clearing away all of the branches. It takes several hours to drag branches into a pile in front of the house, break up smaller branches, rake up and bag tons of pine needles. “It smells like Christmas,” notes The Boy. Except for the rivers of sweat rolling off us.

We finish up and make plans to take showers, washing off not only the grime, but any possible traces of poison ivy.

A neighbor comes over, offering us the use of his gas-powered chainsaw. He and The Husband discuss its workings – I heard snippets about “the choke” – and The Husband goes out again. I stop him and tell him that his safety goggles are on his tool bench. He promises to use them and further promises not to cut off anything that is attached to his body. I tell him I’d appreciate that.

I head into the shower. While in it, Bo Peep comes and tattles: “Daddy’s not wearrring his goggles!” I tell her to tell her grandmother. I finish up my shower with cold, cold water to keep the heat at bay.

Through the living room window, I see The Husband, wearing goggles. MIL explains that she went outside and told him all about when she had the torn cornea that lasted 3 months, worst pain ever, including childbirth.

A mother-in-law on your side is priceless.

The Husband finishes and comes inside.

All showered and clean now, we move as little as possible, reading books, listening to the radio, as people call in from all over the city, telling their stories to the tired deejays. With a flashlight, I begin reading Little House on the Prairie to the children. By the time we reach Chapter 5, they are asleep.

Hurricane Ike, Pt. 1

Friday Sept. 12, 2008

We’ve been told that for where we live, we are to hunker down, not flee. We want to keep LW near her hospital and don’t want her out in crowds – or worse yet, out of gas by the side of a road – so we will “ride out” the storm.

We prepare for the hurricane, a mixture of things we’ve heard, items googled under +prepare +hurricane and sheer randomness. My MIL called me from the grocery store on her cell. “I’m standing in front of applesauce, so I bought some.”

Somewhat half-heartedly, we fill up containers with water. Bottles of water for drinking, buckets of water for flushing the toilets. We do this because it’s the responsible thing to do, because it’s what they say to do, like boiling water if a woman goes into labor. MIL has spent the last 30 years in a coastal town, I’ve lived most of my life here. Every year, there’s another warning. Neither of us have actually had a hurricane hit us before. We are going through the motions.

MIL and I are different temperaments; most of the time we complement each other. Right now, she is hyper energetic. She winds up going to different stores at least 5 times. After the second time, she announces the secret gem of Hurricane Preparation – Walgreens. Everyone else is hitting the grocery stores, hardware stores. Walgreens is still pretty stocked. Except for D batteries. None of those anywhere.

The Husband gets home. He and MIL go out again, having thought of yet another little thing that might help. They come back with some odds and ends, plus a bottle of tequila and 2 bottles of red wine. And a bag of dark chocolate.

Meanwhile, I move slowly and methodically, gathering up containers, making a note of things we need to move inside. I am frequently on the computer, reading projected maps, detailed analyses. I charge up everything I can.

That night, we have a good dinner. We keep the news on constantly. We watch waves lick the coast, but it still doesn’t seem dire. Outside, we have a few clouds, but no rain, little wind.

Later in the evening, we go outside to see what it feels like. We spot neighbors down the street, congregating on a lawn. They have out lawn chairs and drinks. We go down, all of us. We chat, we catch up. I guess it’s a Hurricane party. I announce the Hurricane Ike drinking game to them. They all love my line about slugging your partner.

It’s all kind of surreal. We know that a hurricane is coming, because that’s what we’ve been told, but there is no hint of it at our homes.

The bugs are chewing on us, so we head back home. I turn the a/c down extra cold so that if the electricity goes off, we’re starting at colder rather than normal. We watch the tv. We see the flooding in the streets of Galveston, and think of our friends, and the little church there.

The wind is up now. There are tall, giant windows in our living room and we watch the pine trees bend. We are beginning to feel apprehensive.

We put the children to sleep in our bathroom and go back to watching the news. They show satellite pictures of a storm that seems to fill the entire gulf. We know we will be affected, we don’t know how much. “If it leans just a little bit to the east, we will be in better shape,” announces The Husband. We have all learned that to be on the west side of the hurricane is better. We are becoming meteorologists by the minute.

We watch the newscasters. They have gone too long without sleep and are punchy. We mock them, but listen to their every word as if they can tell us what will happen to our house before it does. Suddenly, everything goes out, tv, lights, the hum of the ac.

We sit on the couch. It’s so dark outside, we can’t see much of the wind and rain, but we begin seeing flashes of light. “Lightning?” No. It’s all the transformers blowing out. One, two, three … we can’t count them all. Over and over.

The wind is louder now. We decide we should move into the master bedroom. The Husband has already moved a mattress into our room for MIL. The children are asleep, oblivious to the storm. We turn the radio on to listen to the reports. The Husband, whom I’ve always joked could sleep through a hurricane, does just that. MIL and I doze, never quite sleeping.

At 4 am, it’s darker than I knew dark could be. The saying about not seeing a hand in front of your face is apt. Open eyes, closed eyes, it makes not difference. The wind no longer howls, it screams. Things rattle; I don’t know what. There is a large crash. There is a strange sound, like someone rattling ice in a glass. I lie there, wondering. Has a window broken and I’m hearing a miniblind slamming back and forth? There’s no hail in hurricanes, I know that much. What I find out later is that the rain is literally coming in sideways, pounding on the windows as it pounded on the ground earlier.

I am scared. There are no words to describe what the sound of a hurricane is like. I keep listening for that sound of a speeding train that they always say heralds a tornado. I think I hear it half a dozen times, but then it changes. The wind is coming from all directions and it sounds as if the house might just be ripped from its foundation.

A bit of the dawn is coming through. It is still dark, very dark, but it is not the smothering darkness of earlier. The winds still howl, but they seem slightly less scary. I become aware that MIL is also awake. The children and The Husband still sleep.

I fumble for a flashlight and MIL and I timidly leave the relative safety of the bedroom, not knowing what we’ll find. Has a tree crashed through the roof? Have any windows broken?

I go over to the window and shine the light outside. The storm is still raging, but my flashlight finds a broken tree, just a few feet from the window. The railing of the deck is broken. But the windows there are whole. I back away. The storm isn’t over yet.

We are afraid to venture upstairs, but we look around the downstairs. There don’t seem to be any broken windows. I shine my light out the window on the front door, but it just reflects back to me. It can’t pierce the dark.

We sit on the couch and watch the light slowly come up outside, even as the winds still bend the trees back and forth and the rain pounds down. The Husband is up by now. He checks upstairs, and reports no damage. We are cautiously thrilled. The radio says we have 4 more hours of this. As we get other “bands,” it could get worse. But it sounds like the eye just missed us. Just by a difference of a few miles. We were on the left side of the hurricane, which is the right side to be on.

Eventually, the winds die down. The rain slows to a drizzle. We discover our back fence is completely down, our yard covered in big branches. But we are grateful. We are alive and our house still stands.

The Rest of Saturday

We are careful to not open the big freezer at all. When we go into the refrigerator or little freezer, we are quick and deliberate. At lunch, I stand in front of the closed fridge and catalog everything we want. Sandwich meat, cheese, condiments, milk. I take a big breath and dive inside, grabbing and snatching. I slam the doors closed.

Some of our neighbors go out in the rain and begin clearing their yards, using chainsaws to saw large limbs into manageable pieces. They rake up the smaller twigs and all the gallons of pine needles that have fallen.

We are tired. The children play quietly and the adults dose off every now and then. At nine o’clock, it is dark outside. The heat and humidity is oppressive. Even though we have hot water, I take a cold shower in the dark, then stretch out naked on our bed and fall asleep.

Recovering from the Hurricane

We're okay. We're in the hospital.

Wait. That sounds like when my mother said, ""LE was in a car accident. You don't have to do anything. I have it all under control. She's at the Klein Funeral Home."

So, answering questions I've received:

1) Everyone in my family is fine.
2) As far as we can tell, our house is fine. Back fence blown down, some damage to our deck where it was attacked in a fit of dying rage by a tree.
3) We still don't have electricity at my house.
4) My kids are, amazingly enough, neither wrecking the house nor killing each other. We got a cool front, so they're running and playing and reading books. Oh, they did spend the first day "pretending" to play Wii, but they got past that.
5) It was very scary.
6) I still think not evacuating was the right thing to do, based on our circumstances and where we live. But after going through that (see 5) I would definitely evacuate for a Cat. 3.

We are in the hospital for LE's 4 day chemo, delayed a week due to the Hurricane. Not something I figured on when I wrote up the schedule, but I always wrote the schedule in pencil anyway. She and I are enjoying electricity, wifi, tv, air-conditioning, and ice. ICE! Until you've gone nearly a week without it, you can't imagine how much ice is a part of your life. For once, we felt like the lucky ones, leaving the rest at home.

I wrote some of the experience as it was going on. I'll be posting that later.

Thanks for caring, guys.

Hurricane Block Party

We live in an area that could be affected by the Hurricane. We are far enough away to feel fairly safe hunkering down, but close enough to fill every vessel with water and make plans to be in a room without windows. For Hurricane Rita, we fled, enduring a 19 hour trip of what would normally be maybe 4 hours. This time, we have the counter-balancing risk of having Little Warrior out in crowds or being stuck by the side of a road. So, we stayed home. We watch our giant trees sway ...

Right now, there is no rain, just wind. Nothing big yet. We went outside to see what it was like, to discover that most of our neighbors had converged on one front lawn with chairs and chatting. Amazing the things that cause us to gather in community.

In chatting, we discovered that two of our neighbors are cancer survivors. (We had our bald Little Warrior with us, so the subject came up ...) One, who we knew was fighting The Beast, has been off-treatment for a couple of months. Another, 10 years. We introduced both to LW. I think it's good for her to see grown up survivors.

The BFF-DRE emailed me a drinking game that we keep adding to. Potential calamities do bring out our twisted humor, don't they?

rule #1: Swig every time someone says/writes "Houston, We have a problem"
rule #2: Eat a nut (or other salty snack) every time someone says something about "Why haven't they evacuated?"
rule #3: Sip every time someone says "Monster"
rule #4: Swig every time someone says "We DON'T like Ike"
rule #5: (mine) Chug every time someone makes a reference to Ike or Tina Turner. Then slug your spouse/partner.*
rule #6 anytime someone says "hunker down" = eat a hunk of chocolate.

We still have electricity, but I don't know for how long. So I'll just say take care, shine on, and if you live somewhere else, have a good night's sleep.


*I'll go back to being sensitive and politically correct after the Hurricane.

If you want to feel better about the world,

Just read this.

I'm a big fan of Pioneer Woman. The way she writes about things like this is one reason why.

Bald Babycakes

Being in CancerLand, I've become friends with many other cancer parents. Even though I'm immersed in the world, it's still shocking to me to see the difference in their BC child (before cancer) and OT child (on treatment).

Unlike real life, I usually see these backwards. I see the child while on treatment, then at some point, I get to see a picture of them before diagnosis.

Every time, it's a shock. They're sooo different. Bald, no eyebrows or eyelashes ... then you see the older picture and they look so ... normal.

Well, now I'm living it. Last time, LW was a baby, so she didn't have much hair to lose -- and since she was on a 50% dose, she didn't lose much, anyway. Never lost her eyebrows nor eyelashes, either.

This time ... wow. What a difference. Living it, what is shocking is when I look back. That picture at the top, it was from Easter. Really, did she look like that? This other one, I took the other day.

Not even 6 months.

Go ahead and flip back and forth between the two pictures. I did.

It's interesting how much our individuality comes out in our eyebrows, lashes, and hair. If you get a bunch of cancer kids together, many of them look like siblings.

I guess it's kind of like the "all Asians look alike." We've all got lazy eyes. We go around noticing all the prominent stuff, so when that's the same, whether it's all black hair, or all no hair, our eyes aren't as attuned to picking up the more subtle things. Unless you're actually living in black hair land or no hair land.

I haven't taken home someone else's cancer kid by mistake. Yet.

A cool breeze

Sometimes, something comes along from the universe right when you really need it.

Along with all the heartache, we've reached that time of the year I refer to as I JUST CAN'T TAKE IT ANYMORE ... referencing the humidity, extreme heat, and mosquitos.

I assume that it bears some similarity to living way North and having a long winter where you just can't take being cooped up inside anymore. Down where I live, most people go from air-conditioned house, to air-conditioned car, to air-conditioned work, mall, entertainment. You get to the end of the summer and you don't even want to go outside to get into the car. Too much energy. Too much gas. No one wants to bug-spray themselves just to walk 8 yards to the car, but then you get in the car and find 5 bug bites and hear an annoying buzzing by your ear. Better to just zone out in front of the tv or computer.

Today, I went outside and the expected blast of heat didn't happen. It was ... temperate. The humidity had lifted. The skeeters seemed to be sleeping.

It was 82 degrees, with a slight breeze. Not fall, but it held the promise, that really, truly, autumn will come.

"Kids, kids," I yelled excitedly, running inside. "Get on your clothes! Put on your shoes!"

"Where are we going?" called The Princess, echoed by her brother.

"We're going ..." I paused for dramatic effect, "OUTSIDE."

They tumbled down the stairs, looking at me suspiciously. Had Mom lost her mind? Were they being punished for something?

"Really!" I assured them. "It's wonderful outside! It almost feels like fall!"

Shoes, tshirts and shorts, (hat for LW) and they came out. For a couple of hushed minutes, they just roamed around the yard, pulling the swings down (put up in case of hurricane), discovering a large spider web, become reacquainted with their own backyard.

This was followed by a raucous game of I-don't-know-what, yet another complicated game with a million rules, designed by The Boy. I started to see hints of frustration in the girls' faces, so I stepped in and introduced them to Octopus Tag, followed by Father May I and other fun.

It'll start heating up again. But I got a breath of fresh air. It will sustain me.

Oh ... okay (sigh)

Well, I watched Stand Up 2 Cancer. And unlike what I said below ... we donated.

What can I say ... when it comes to cancer, I'm addicted to hope.

Big C day

Well, you guys know by now that it's a roller coaster for me, and some days, the big C hits harder than others.

This is one of those days.

Yesterday, I got a call from the clinic. Little Warrior's counts had come back and she needed a blood transfusion, which we did today. It's nothing horrible, it's just annoying -- getting up early, driving down there, wait, wait, sticking a needle in my baby, wait, wait, type and cross, wait, wait .... wait some more, finally, the infusion, which takes 3+ hours. So The Husband had to stay home to get the other three off to school, then since he would have had to turn around and come home to get them after school, he just stayed home.

WE are lucky. Because The Husband can do some work at home. (He's a consultant, so if he doesn't work, he doesn't get paid.) I am lucky. Because I have a partner. I don't know how single cancer parents do it. I really don't.

Last night, we went to The Boy's school open house. As I was walking past a hallway, I saw something out of the corner of my eye and did a double take. I went streaking back, The Husband behind me, wondering if I'd lost my mind.

There's a cancer dad whom I know through email and through this blog. I've seen pictures of his son.

There was a giant framed picture of his beautiful son up on the wall. He and my son went to the same school.

Kick in the stomach. Cancer world and regular world collide.

As I was in the infusion room today, I checked email. There was a notice that the website for one of our Wilms' friends had been updated.

I didn't check it. I knew what it would say. I had to wait til I was safe at home.

A beautiful teenager has left this world. Spunky, courageous, funny, and beautiful. She walked with her friends across the graduation stage last spring. (She didn't have the credits, but some schools are kind.) She went to Prom. In August, she watched her friends go off to college, knowing she never would.

Tonight is Stand Up 2 Cancer. We'll watch it, because I've heard that one of our Wilms' kids will be on. I won't be donating to them, because I haven't received confirmation that any will go to childhood cancer research. (And I have heard, not officially, that it won't, because they want to put it towards "high impact" projects.) Not that they're not a good organization, and not that adult cancer doesn't need the research. But I think I can be forgiven if I selfishly send a donation to Curesearch, instead.

So ... some days, the Big C fades into the background. It never disappears, but sometimes, it's just part of the wallpaper.

Some days, it's front, center, and leading our parade.

But we're lucky. Because we're still in the parade.


Related:

Lemonade and Haircuts

Responsibility?

Anyone know of a fabulous UU sermon that touches on "responsibility"? One that would be good for being pulpiteered by a lay person?

Goodbye, Danny

Oh, MAN.

The Husband and I lived for many years in Austin, TX. Living there, we got to know the "mayor of South Austin," Danny Roy Young.

We'd go eat at his little cafe and Danny was almost always there. If you walked in, you were a friend. Many restaurant owners will walk around their business, greeting customers. Not Danny. He'd come to your table, grab a chair, turn it around and straddle it, and talk to you. Really talk to you.

He was right in the middle of the Austin music scene and seemed to know everyone. It was rare to eat at his tiny cafe and not see a musician there.

He always seemed happy. He ran his cafe, and played washboard in a band and just really seemed to love life. He'd drive all the way to Dublin, TX, to buy real Dr. Pepper syrup for his Dr. Peppers and ... really ... Dr. Pepper milkshakes. (They were delicious ... and oh, the cornmeal-crusted fried yellow squash ...)

Damn, Danny. It was too soon. Last time we saw you, on a visit, you gushed over all our kids and walked us out to our car. Because that was the kind of thing you did. With all your friends.

Which is to say, everyone.

Best friends

"Mom, there's a new girl in my class!" Bo Peep tells me, excitedly. "I think she might be from another country, but I'm not sure. And she sits at my table."

"Cool," I say. "She might wind up being your best friend and you don't know it yet."

"Mo-mmm," she practically rolls her eyes, "she already is."

"What's her name?"

She wrinkles her forehead. "I don't know."

"Does she like what you like?"

"I don't know. We didn't really get to talk."

"Hmm," I say, curious. "So how do you know she's your best friend?"

"I just DO! And after lunch, when we were standing in line, she asked me what my name was."

Sometimes, I really miss being 6.

Amy Goodman arrested at RNC

Story

Parenting and Sarah Palin

I planned on writing a post today in defense of Sarah Palin.

Not defending her policy beliefs, many of which I strongly disagree with. But her decision to accept the vice-presidential nomination, even with having a special-needs infant.

I am curious about how her family is dealing with having a child with Trisomy 21, and whether they are pursuing different therapies. Witnessing this experience with someone close to me, she and her husband immediately threw themselves into getting every bit of information as possible, and altering their lives to give their son every possible advantage in dealing with this.

I will admit that my first instinct was "What kind of a parent is she ..." to take attention away from her son and put it on running for office.

But ... c'mon. This isn't a case of turning down a promotion to vice-president of Company and Co. This is vice-president of the United States, what truly might be a once-in-a-lifetime opportunity.

So ... I was prepared to defend her willingness to accept the nomination.

But this, now, with her 17 year old daughter pregnant ... well, for me, that's different.

Part of our instinct, with our children, is to protect them from pain. Some times, that makes us make poor decisions. The parents who encourage their children to "stay in the closet," for fear of the discrimination they'll face, as one example.

But to accept the vice-presidential nomination, knowing that your teenage daughter is pregnant, knowing that the story will come out, and she will be front-and-center, not in her home state of Alaska, but across the entire United States, and so, the world ...

A little after hearing about Palin's announcement about her daughter, we watched the documentary, For the Bible Tells Me So, that profiles families dealing with their children's homosexuality.

One of the families is that of Dick Gephardt. Before launching his 2004 presidential campaign, he talked to her adult, lesbian daughter, Chrissy. He knew that his campaign would cause her and her sexuality to be put in the spotlight. He knew she would be a lightning rod for criticism and hate. He told her that if she didn't want him to run, he wouldn't.

That is what a loving parent, who puts their children before their own ambition, does.

Career and family ... it's always something to weigh. It's often not easy. I struggle with it. At this point, I'm planning on going back to school in the evenings, next January, assuming LW's scans are clear. She will be without me for a few hours each week. I think that's an acceptable price for the return.

But to put your child, your 17 year old child, in a position where they will be in the headlines for a mistake they made (and yes, I think getting pregnant at 17 is a mistake) ... I think it's cruel.

Not the kind of thing a loving parent should do.