Sunday, April 29, 2007

Opening Yourself to God's Loving ... Through His Worker Bees

Peacebang has graciously invited others to share their thoughts on being tuned in to God, or as she says:

"Is there some other way to experience God's love that doesn't involve practicing love as best you can? I mean, some passive way where you don't have to do anything, or put anything out?"

I can say, unequivocally, Yes. And it's completely passive. In fact, that's the whole point.

One very important way to experience God's love is to passively accept from others.

Before All of This, I thought I was good at receiving from others. I fought the "do it all myself" urge and thought I did well, accepting the help and gifts of friends, acquaintances and family.

But here's the deal: I only accepted from others on my own terms.

I judiciously chose where and in what context I accepted help. I didn't realize it, of course. But I was Self-Reliant, capitals deliberate. Sure, I could accept your assistance on MY project. "Can you do this particular thing that I know you're gifted at?"

Not that it was one-sided. Ye Gods, no. Because then you might think poorly of me. So I was there with bells on to give you assistance on YOUR project.

I carried myself as Someone Capable. So, sure, I was happy to receive from others. As long as it never required that I show any vulnerability. Grateful, yes. Needy ... never. If I accepted help, it was in a context of reverse tit-for-tat, "Okay, I'll let you do this for me -- but I owe you!"

And then.

And then it all came crumbling down. Any possibility of facade blown away. All I could do was focus on my family. And even that, much of the time, was impossible. I could only focus on one member of my family. I was up at the hospital. Not only could I not DO, I couldn't even control the puppets. I couldn't arrange for this person to do this and that person to do that because I was at the hospital. I didn't know that Kid A had a project due Friday and Kid B needed a permission slip signed. I had to cede authority to others.

Those who cared for us, took on assertive roles. They brought food. Filled our freezer. They didn't ask. They just did. My parents "parented" their grandchildren. Even at home, my focus was on Little Warrior. Holding her as she vomited from chemo, or slept from chemo. Prayed. Stared at her face, memorizing it.

And other than taking care of LW, I was, for the most part, passive. My sister-in-law paid for a maid to come every couple of weeks. I sat on the couch with LW as she vacuumed around us.

For the first time in my adult life, I accepted help on the terms of those who gave it. It wasn't because I deserved it, it wasn't because I requested specific actions, it wasn't quid-pro-quo. They gave. Whether I deserved help, whether I could pay back their help -- these were completely immaterial. They gave. The ladies in my neighborhood even took turns deliberately giving things that I didn't "need." Bath gel, candles -- they wanted to give things just to give me a smile. I was new to the neighborhood. They didn't even know me. Do you get what I'm saying? This was unearned. They gave simply to give.

And I learned to accept. To gratefully, passively accept. And I began to see that in my passive acceptance, I was, in fact, giving back. I gave *them* the opportunity to give. I remember when it all began, saying to The Husband, "But I don't want to be the person getting casseroles. I'm the person who MAKES the casseroles!" I now know that there is something selfish in that. People like to give. It makes them feel good. And if it is a bit humbling for you, to just passively receive ... well, that's fine, too.

I was not raised a Christian, but I have studied the concept of grace. Grace -- unearned, perhaps undeserved. Given freely.

Now ... I understand it.

Friday, April 27, 2007

I'd like credit for Stress Served, please

siiigh. laugh. Okay.

Made it through the "no food or drink" portion of the morning. Got down to the medical center. (1 hr, 15 minutes.) After being taken back for vitals and such, it was revealed that Little Warrior was running a fever of 100.5. No big deal ... but too high for anesthesia and CT/MRI. Rescheduled for 2 weeks from today. The Friday before Mothers' Day. Did Lizard mention that she'll be in the pulpit that Sunday? And that LW is finally going to be dedicated ... that Sunday? And we won't know the results until the following Monday?

Well, it's sigh and laugh time. 'Cause what else can you do? In any case, I did more than enough stressing this week. Hold that, freeze it. Apply along with cold compresses in two weeks.

As for me, it's margarita time. More importantly, it's Thai Spice chips time.

Thursday, April 26, 2007

Look around at Normal ... take a big breath ...

And enjoy it.

As I have posited many times, in many posts, I don't think that there is anything, ANYTHING that makes LW getting cancer worth it.

But I am also grudgingly accepting that a silver lining doesn't mean the hurricane was worth it, either. But to ignore the silver lining is just ... wasteful.

The one thing with all the scare and fear and worry ... after I've done some laundry "just in case" I need someone to bring me a pile of clothes to the hospital ...

Tonight, everyone has gone to bed except me and the dog. I finish watching Grey's Anatomy, look around my living room, and take a moment of appreciation. Because here, tonight, I am home. I don't know what will happen in the next 24 hours, and I certainly don't know about the next four days. But tonight, I am home. Tonight, my 4 children are all asleep in their beds. Tonight, my husband is asleep in our bed.

Sometimes, Normal looks so normal that we don't appreciate how beautiful it is. How heartbreakingly, like-the-poet-writes, beautiful.

Tonight and tonight and tonight.

Forget Jimmy Choos, THIS is style ...

Over at mybreastcancernetwork.com, they have a special on "Chemo Style." Lots of very cool women showing how they do it. Bald, tattooed, wigged or hatted (bewigged? Behatted?), these women have class.

Ladies, remember being a teenage girl? Yes, you do, because I heard that collective "ugh." Well, I've had the privilege of getting to know two very cool teen girls, due to our common "interest" in Wilms' Tumor. Neither has had an easy path. Not that anyone with cancer does, but for some, it's uh, less easy, than others. Stem cell rescue and transplants and all that good stuff. And, of course, they lost their hair. Remember how YOU had a cow over a bad haircut when you were 16? I know I did.

I won't invade their privacy by linking to their private websites. Just trust me when I tell you that they could make baldness and/or wigs the hottest fashion. Because they have continued *living* while being in treatment. Even going to dances, after begging their oncologists for permission. (I would say that their escorts were princes, too, but really, they were lucky to be in the company of these fabulous girl-women.)

STYLE. I've learned a lot about that in a year.

Oh, and did LE mention she's in the pulpit this weekend?

Yup. I'm preachin' at a church I've never spoken at before. It was scheduled a while back, hence the fun sandwich. Friday: scans. Sunday: sermon. Monday: Get results of scans.

LE's BFF is DRE at this church. (ahem ... Lizard Eater's Best Friend is Director of Religious Education at this fellowship.) So she knows that if something really awful happens tomorrow, she'll be reading LE's sermon from the pulpit.

Sermon topic, already chosen earlier: (to quote from myself) "We need not have all our theological questions answered before we give ourselves permission to experience the joy of religious expression."

In other words, sing the songs, dammit.

And for anyone who hasn't run across it already:

What Should We Do about that Moon ?

A wine bottle fell from a wagon
And broke open in a field.

That night hundred beetles and all their cousins
Gathered

And did some serious binge drinking.

They even found some seed husks nearby
And began to play them like drums and whirl.
This made God very happy.

Then the 'night candle' rose into the sky
And one drunk creature, laying down his instrument
Said to his friend - for no apparent
Reason,

"What should we do about that moon?"

Seems to Hafiz
Most everyone has laid aside the music

Tackling such profoundly useless
Questions.

From: 'The Gift - Poems by Hafiz the Great Sufi Master'
translations by Daniel Ladinsky

Wednesday, April 25, 2007

Letter to Myself For the Next Scan Time

Dear Lizard Eater,

Three months from now (pleaseGodknockwoodThankyewJesus) when it's time for Little Warrior to have her routine CT and MRI, please revisit this letter.

When you ask yourself, "Is it getting worse? I don't remember being this freaked out last time. OH GOD. Maybe it's because I'm somehow sensing something ..." Read this: YES. YOU WERE THIS FREAKED OUT LAST TIME. You want to think that this is going to get easier. It is not going to.

Right now, I am extremely irritable. I am seeing connections that are not logical, such as:

"LW had bad diaper rash right before she was diagnosed. She has bad diaper rash right now. OH GOD what if it means the cancer has come back?"

Note: do not share the above worry with anyone who won't immediately say, "Oh, don't be silly. They're not related." Like Friend L who said, "Well, maybe the cancer coming back would make her immune system not be working well."

NOT HELPFUL.

In fact, Lizard, maybe you should just stay away from human contact for a week. Have a week of isolation. Except for your husband and 4 kids. Hmm. Perhaps you could bind and gag them?

Do not watch any medical shows, like House, because that will surely be the one week out of the entire season when the spotlighted patient actually dies.

Don't even think that you can get in some good escapist tv, like American Idol. Because just as surely, that'll be the week they do "Idol Cares" and show people all over the planet, especially babies, dying. Next week, back to the metaphorical dying on stage.

You will be emotional. You will be pissy. Don't read email, because then you'll probably get some email like the one this week from the American Cancer Society, bragging that they give 4.2% of their research money to childhood cancer. A whopping 4.2%!!! What, you're not thrilled?

Next scans, next scans, next scans. Well, if all goes well with these scans (pleaseGodetc.) ... wait. Sorry, I'm just in the middle of anticipating that incredible lifting, that hysterical joy ...

Okay, if all is well with these scans, then next scans will be in July. All the monkeys will be at home; need to arrange for their adopted grandma to come spend the day. Wonder if LW will still be nursing? If she is, figure out a drink she likes, so she can have it when she wakes up from the anesthesia.

Next scans ... July, I mean ... that will mark a year off-treatment.

Breathe ... breathe ... suppress the urge to run around the house knocking on wood and screaming prayers to Jesus, Allah, Thor, Kali and whomever else is listening.

So, in summary, Three-Months-From-Now-Lizard-Eater:

Yes. You were this freaked out last time.

Tuesday, April 24, 2007

Who Had the Sex Dream about Tony Soprano???

she demands, jerking her head around suspiciously.

'Fess up. I can't remember whose blog I read it on.

But whoever you are, I woke up thinking about you this morning, and your blog post which said, (and I paraphrase), "WTF??? Why would I have a sexy dream about HIM?"

Last night, I had one about ... Taylor Doose, from Gilmore Girls.

Those of you who watch the show are falling out of your chairs, laughing right now.

I'm not saying a sexy dream about the actor. A sexy dream about the character. A blowhard, sarcastic, prudish ... oh, you know the type.

I don't even want to think about any possible meanings for this. It was a synapse misfiring.

PERIOD.

Monday, April 23, 2007

5 Blogs That Make Me Think

Okay, my five nominations for Blogs That Make Me Think:

Heart of a Family by Nancy. On the surface, it's a blog about a young mom and her young son, who has the rare Williams Syndrome. But Nancy is a fantastic writer, a poet, and devastatingly honest. No saccharine here. But it's also a love story as a mother and a child learn together how to negotiate unfamiliar terrain.

for smith's sake by Anne. Anne loves sex, booze and karaoke. She is hilarious and outrageous. She also happens to be dealing with ovarian cancer, a fact that she only marginally allows to infringe upon her enjoyment of the above, to the exasperation of her oncologist Hot Doc. Oh, and she loves her adorable dog Rickey. And we, her humble audience, love her.

Auspicious Jots
by Rev. A.C. Miles. I'm sure she's a fantastic minister -- her posts are deep, emotional, and they force me to think, whether I want to or not. But I'll confess. I want to live next door to her and have our kids in the same playgroups. I bet she's a super mommy-friend. Plus, she loves Slurpees.

Boobless Brigade Master
is another of my heroes. She's a great Mom, funny as hell, and tough enough to allow herself to be tender and vulnerable. We're both having 20 year class reunions this summer and I wish I could crash hers, and she, mine.

The last one isn't a person, per se, and not one who can respond to this meme, but I've got to include it. It's more like a blog aggregator, but with full or almost full posts. It's called The Cancer Blog and it hooks you up with the latest research, humor, news, personal blogs and all that is cancer. A club that I never wanted to join, but there you go.

Albeit Annoying Children

Thanks to UUMomma for the shout out nom as a blog that makes her think and the nice things she said. I have to confess that The Husband and I both got a good laugh out of her sentence "I mean, how much can I complain about my healthy albeit annoying children when I read about how she is putting one foot in front of another despite and because of her baby’s cancer."

We complain quite a bit about our own healthy albeit annoying children, including Little Warrior. (Healthy ... pleaseGodknockwoodThankyewJesus ...)

Little Warrior is in the terrible twos. TERRIBLE TWO'S. As in, "Were our other children this bad???" Of course, it's not actually bad, it's just being an almost-two-year-old. Throwing complete and utter froghead fits because Mom insists that you eat the chocolate pudding at the kitchen table, as opposed to the carpeted living room. Being unable to take said child into a restaurant. Having to leave meetings early. Those of you with children, you know.

I sound remarkably well-adjusted, though, don't I? Ha. So we go through all that, and have the normal feelings one has with a two-year old (namely, wanting to put her in a straight-jacket and shove industrial-strength earplugs in my ears -- The Husband can just take his hearing aids out) ... and then think ... "But what if all this changes. This is nice and normal and even her driving me batshit crazy is normal."

So you wind up having really psycho thoughts like, "Okay, KID, please God let the cancer still be gone and let you be healthy so that I can get back to wanting to cage you!"

pleaseGodknockwoodThankyewJesus

Sunday, April 22, 2007

You completed your tour of duty

In the cancer zone. And survived.

You were wounded, yes, but not permanently. You faced fear. Cried tears. Faced death. But ultimately, you made it back home.

The price is that every three months, you have to go back. Just temporarily. Just a quick visit. Every three months, a helicopter will take you back, and drop you -- just for the day! -- back in the jungle. Hopefully, you'll just wander around the jungle, then get picked up and returned home. But everytime, you know. You may have to stay in the jungle. You may be called for another tour.

The date is on your calendar. Time grows closer to Scan Day, and it is like you just left last week.

It's scary. And you cry a little. But it's the price you pay for getting to return home.

And God, is it worth it.

Tuesday, April 17, 2007

Thoughts on Suicide

We don't know the details yet of Cho Seung-Hui. There has been mention that he had been treated for depression. But we don't know his story. Not that any story could justify his horrendous acts of murder. But that's not the point of this post.

I've mentioned before that I had a brother who, at 23, committed suicide. As for the reason, we'll never know. He left no note, he told no one.

What is not a mystery is that he had suffered from some sort of sickness of the mind for some time. Even our hindsight isn't 20/20. This was back in the 70's, and diagnoses were not so seemingly easily made as they are now. Perhaps it was some form of bipolar disorder. Definitely some depression: my brother seemed to have been born without the filter most of us have that allows us to exist in the world. All of the ills of life seemed to hurt him personally.

Remember some years ago, when a mentally disturbed person walked into the capitol building and shot at some guards, killing at least one? It was at that time that my mother and I talked about my brother and agreed that there WERE worse things than suicide.

Part of me will always wonder what my brother would be like today, what could he have accomplished in his life, if he hadn't ended it.

But days like today, I am also reminded ... yes. It could have been worse.

Went and saw "Wicked"

Went on a fer-real date Saturday. The MIL had given us tickets to see the touring show of "Wicked" at a 2:00 matinee, and SuperFriend not only watched all the kids, she said that if we returned home before 7, she would just shove us out again. So, dinner and a show!

"Wicked" was very entertaining, fun concept, good dialogue. Very talented singers. Only problem: walking out of the theatre, we didn't have a single song bumping in our heads. No hooks.

I'm not up on all the latest theatre. Are there any talented lyricist/composers out there? Any "When you're a jet ..." or "I'm gonna wash that man right outta my hair ..." or heck, even "It's the hard-knock life for us ..."?

Back to the show. I appreciated the fact that it was a love story ... a love story between two women friends. It wasn't until my 30's that I really *got* friendship. I mean, I always had friends, but I didn't really get the level of intimacy and commitment that women can have for their friends.

I do now.

Wednesday, April 11, 2007

YOU CAN'T LEAVE THE NEIGHBORHOOD

I am madly envious of Another Working Mom, and not just because she has a great garden, and not just because she has great parents who are moving to her town, but chiefly because she can actually bike places.

I recently bought a nice cruiser bicycle for myself, so that The Husband and I could take bike rides at the same time, rather than trading off. Plus, he has a big macho bike with an uncomfortable seat, and no kickstand*, and you have to hunch over the handlebars.

* I know, kickstands aren't cool. And if you're Lance Armstrong, they get in the way. However, I pull a double baby cart behind my bike, which means I have to strap two babies (one baby, one toddler) into it, and you try doing that while holding up a bike that has no freakin' kickstand.

But I digress.

Imagine, if you will, a square. Inside the square is our neighborhood. On sides A, B, and C are grocery stores/strip malls with restaurants, frozen yogurt, a used book store, a bead shop, etc.

On side D is a sidewalk. A nice, wide-enough sidewalk to ride one's bike. (The streets on sides A, B, C and D are filled with racing traffic, making biking -- especially with a cart of precious cargo -- a really bad idea.)

But here's the rub. Just about a block on either end of side D ... the sidewalk ends.

Ends!

Now, Shel Silverstein referred to the place where the sidewalk ends as a wonderful, lovely place. But when one is on a bike, pulling a cart, the place where the sidewalk ends is a big fat slap in the face. One expects to hear a big booming voice, like from that movie with Jim Carrey where his life was secretly a movie set. "Do Not Leave The Neighborhood."

I want to move someplace bike-friendly. Memphis is looking good.

Tuesday, April 10, 2007

Easter is excruciating for some mothers

If you're a mother, and a Christian, and one of your children has died, Easter is excruciating.

I admit, even with what we've gone through, I didn't think of that. But there are several friends I've made in this journey, whose children died from this horrible disease.

For them, Easter is pain on top of pain. Preachers stand in the pulpit and say, "I can't imagine the pain Mary went through, watching her son die."

These mothers say simply, as one did in her blog, "I do."

Friday, April 06, 2007

Living with Cancer in America

The cover story in Newsweek this week is Jonathan Alter's My Life with Cancer. It is very, very good and he has a particularly good turn of phrase, describing what it is like to be, or love, a cancer survivor. And as soon as you get the diagnosis -- you are a survivor. You begin surviving at that moment.

One such excerpt:

"Many will never achieve remission at all, while the lucky ones like me get to live with a sword of Damocles hanging over our heads. A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."

He has another good piece, only available online -- Just Not, Lest Ye Be Judged -- in which he tells those who criticize the Edwardses that until you're in the situation, you don't know how you'll react.

I will admit to being a bit frustrated that with all the articles about being a cancer survivor, online and in the print edition, none touch on childhood cancer. This seems a bit preposterous to me -- after all, these are the people who will (hopefully) live as survivors the longest. These are the people, like Little Warrior, who will have no memory of an identity that doesn't include being a cancer survivor.

When this first began, I remember saying, "This will not define me. It will not define her."

I stand by that, but I have also come to realize that it is now a part of both of our identities. And there's no way I can keep that from happening. If all goes well, until she's 6 years old, LW will be going for scans to see if the cancer has returned. What, I can do a Roberto Benigni and tell her that it's all a game? "Today, darling, we're going to Magic Tunnel Land! You get to go on a supercool ride called an MRI. You have to lie very still and if you do, you win a tank!"

So, The Husband and I will do the best we can. We won't tell her that she survived because "God has plans for her," -- that denigrates the children who don't make it. But we will explain that this is something that happened when she was just a little baby. And we will talk about all the people who sent cards, and prayers, and teddy bears. And every year, she will take her lap in the Relay for Life.

Please.

Thursday, April 05, 2007

Diaper rash tip for Mom and Dad

Okay, we interrupt our regularly scheduled program for this tip:

Maalox for diaper rash!

Little Warrior has been fighting yeast infection/diaper rash for about a month. Just wouldn't clear up, even with Nystatin. Also tried Dr. Smith's and Boudreaux's Butt Paste. Yes, that's really what it's called.

(Sidenote: if you want to be rich, come up with a great diaper rash cream. EXPENSIVE stuff, that.)

And speaking of expensive ... doc gave me a script for Oxistat cream. $50, and that's after insurance. And I wipe this on her butt?

Anyway, in addition to the expensive stuff, doc told me to take Maalox, wipe it on her bottom, and let it dry. So, you heard it here.

Apparently tummy-medicines are good for tons of other things. Back when I was young and acne-prone, I used Milk of Magnesia for a face mask. (Magic!) And the secret-underground relief for a bad sore throat or mouth sores (that all dentists know about) is to mix equal parts Benedryl and Milk of Magnesia, swizzle 'round your mouth, gargle for sore throat, then spit out.

Lizard Eater is not a doctor, your mileage may vary.

Monday, April 02, 2007

April is Cancer Control Month -- President Bush

Apparently President Bush has decreed that April is "Cancer Control Month" in a press release.

No mention was made of all the millions he has slashed from the National Cancer Institute's budget.

Instead, he focused on what individuals can do to prevent cancer. "Individuals can reduce their risk of developing cancer by practicing healthy eating habits, exercising, limiting sun exposure, avoiding tobacco, knowing their family history, and getting regular screenings from the doctor."

Good for him. If Little Warrior had just gotten her lazy 7-month old ass off her blankie and jogged every morning, and if she had kicked that 2 pack-a-day habit, she probably wouldn't have gotten cancer in both of her kidneys.

Sucks, Niggardly and Other Words

I have to quibble with my favorite minister-I've-never-met, Rev. Christine at iMinister. She takes on the phrase, "It sucks," and gently denounces it for its homophobic backstory.

I agree that part of the meaning can be referring to male-male oral sex, however, "sucks" as a pejorative goes back farther. Growing up with a country-boy father, I was familiar with the various permutations of "sucks eggs." Such as in the first chapter of Tom Sawyer, when the stranger-boy says to Tom, ""You can lump that hat if you don't like it. I dare you to knock it off-and anybody that'll take a dare will suck eggs."

I will not be so disingenuous as to suggest that modern teens, when saying, "You suck!" are parenthetically adding "eggs" to the end. However, I think an argument can be made that the current casual usage -- "It sucks," "You suck," etc. -- are completing a circle of meanings. Original: innocent, "sucks eggs" --> at some point, became affiliated with sexual meaning --> has been used so much that it has lost the prior extreme offensiveness.

I am not advocating the usage of the phrase, frankly, it's just not very eloquent, is it? And no matter the origin, there is an offensive shadow that goes with it. To me, it is similar to the word "niggardly." Now that word has nothing to with the "n-word" -- in fact, its etymology is from Middle English/Scandinavia. However, there has been an assumption that one comes from the other; in fact, some public figures and writers have been excoriated for using it. I have certainly dropped it from my vocabulary.

However, for me, unlike "niggardly" which doesn't particularly seem to give more meaning than "stingy," there are some situations in which "sucks" just seems to be the right word. For me, anyway. "Stinks" just doesn't hold the same punch. The lack of eloquence in "sucks," its crudity, becomes part of its desirability.

Of all the things said to me right after LW was diagnosed, the one that stands out was when my friend MouseFace said, "I don't know what to say except that this really sucks."

The cut-to-the-chase-ness, the crudity ... it was the perfect thing to say.

So, me, I'll keep it. Cuz that situation really did suck eggs.