Filled with love - thank you

I am fine.

Thanks to my wonderful friends, including you guys, I am calm. Your prayers, energy, juju and love are sustaining me.

Bags are packed. Shower is taken. Alarm is set. Am about to take Little Warrior and go to bed. It feels like a million miles until I'll be able to do that again.

We'll be in ICU, and I don't anticipate having access to a computer for a few days. Will update as soon as I can.

Thank you, my friends.

Paralyzed

I'm paralyzed.

There are so many things I need to do ... getting the clothes ready for my other three kids to minimize the chances that The Princess and the Boy can convince their grandma that really, truly, it's okay with Mom if they go to school in a ballerina outfit and ripped old clothes, respectively. Getting our bags all packed. Updating my iPod with the playlist of songs I put together for Little Warrior. Finding batteries for the cheapie speakers for the iPod. (Although, with all the other wires and tubes that will be coming from her, having her wear some earbuds would be pretty cute.) Finding my address book so I can write thank-you notes while we're in the hospital (yeah right). Finding all the stuff for the breast pump, since I won't be nursing her for several days.

But I'm paralyzed. It's taking all of my resources to hold it together and not just sit here bawling.

Okay, LE. You've got a to-do list, above. Stop checking your email every 30 seconds. What, you think you're going to get an email from God saying oops, it was all a mistake, and she doesn't really have cancer? That you've obviously learned all about pain and compassion and friends, so the lesson is over?

It isn't coming. Get off your ass and get moving.

Too many worms

First, thanks for all the sweet comments. And Philocrites, thanks for the shout out in your blog. I was very, very touched. Even printed out it out to show my mama. Not that I can make her understand what a blog is.

Way too many worms to stab today. We had out sitdown with the surgeon and the urologist who will be assisting him.

Their goal is to remove both tumors (one on each kidney), leaving enough kidney to function without dialysis. A combined total of 2/3 - 1 kidney is the goal.

Many, many variables in this. After they remove the first tumor, they'll assess whether to continue on with the other one, or if they need to sew her back up, let her recover for two weeks, then do another surgery. Of course, we'd all prefer it be one surgery, but a) she has a heart problem and b) she's less than 17 lbs.

And tons more variables, which can be summed up as "until they get in there, they just really won't know what's what." They can make assumptions about how the tumors are connected to the kidneys, based on the scans, but they just don't know for sure til they get in there.

I'm at information overload. Too many scenarios of what "might" happen ... they plan on working on the kidneys inside her body, but they might need to detach one, work on it separately, then re-attach it. They might keep an echocardiogram on her all the time, to watch her heart. The surgery will probably be 8 hours, (not including anesthesia time beforehand), but might be more. Might, might, might.

One thing to hold onto ... to repeat over and over and over in my head. The surgeon said that the chance of something happening to her in surgery ... and her not making it ... is small. Not something he's anticipating at all.

Oh my God. I can't believe any of this. At Christmas, my concern was making sure she didn't accidentally ingest any pine needles. And whether two kinds of fudge was enough.

Mostly, I can't believe that tomorrow is my last day with her before surgery.

I've got to stop crying. I'm going to have a hell of a headache. And I need to get sleep. This might be the last night to get any for quite a while. Tomorrow night, I have to stop nursing her probably about midnight. And after surgery, we'll be sitting up in chairs with her in the ICU for several days.

I hope, I hope, I hope.

Stabbing Worms

If you run into a fairly normal-looking woman who suddenly begins making stabbing motions at the floor, you'll know you have met Lizard Eater.

See, the dark scary thoughts, as I have written about before, sneak up on you, unnoticed, until they're in your head and you're weeping. For me, they usually come for me at night, when I'm in bed and my defenses are down. I see them as worms. Creepy, crawly worms, quietly wriggling over the foot of the bed, inching up the bedspread, and crawling in one's ears.

The closer we get to Little Warrior's surgery -- Friday -- the hungrier the worms get. They're no longer willing to wait 'til night. Now, when I least expect it ... when I am, for instance, sitting in a hospital exam room, waiting 5 hours for a 5 minute procedure, they begin inching up my shoe, over my jeans, across my shirt, foot over foot up my hair and into my ear ... and suddenly, I am thinking about something I really do NOT want to be thinking about at that particular moment, and oh geez, the tears are starting, fuckitall I wore eye makeup today ...

So, I envision taking the ole straight hoe my mama used to use to lop the heads off snakes in our back yard (making no distinction between the copperheads and king snakes), and I begin stabbing the heck out of those worms at my feet.

STAB, STAB, STAB!!! GO AWAY, WORMS!!!

So far, it's working pretty well. I get a few strange looks and the other parents hurry by me with their children, but that's okay.

STAB, STAB, STAB.

What I Love ...

Okay, taking a break from your regularly scheduled program of angst, pain, cancer and sadness ...

What I Love:

a) The crockydiles in Pearls Before Swine

b) My new haircut. Which is to say, my old haircut. Long, with bangs. As opposed to long, with no bangs. Some women can get away with no bangs, showing their smooth foreheads. Alas, I'm am not that woman. I think this makes me look younger. It probably just makes me look like a dork. Ignorance is bliss, baby!

c) Coffee. With cream. And sugar.

d) Finding a new great blog. Like http://www.dooce.com/

e) Reading my favorite blogs. I am such an addict. Blog-writers, y'all are to me, what "Friends" was to the country after 9-11. Terrific escapism, with the added bonus that I occasionally learn sumpin'. On top of that, you are new friends to me.

f) All the Sweet Potato Queens books. And the Sweet Potato Queens messageboards.

g) Learning a new crazy recipe. My friends know that I love giving them recipes that begin, "Okay, I know this sounds bizarre, but it's really good, trust me!" Like this one, for magic milkshakes (no ice cream).

h) Teletubbies. Because it means that I occasionally have time to drink a cup of coffee and write in my blog.

i) Extra paycheck months like this one.

j) Gilmore Girls. Great, great, great dialog. One of the few shows where I can watch an episode more than once. As fast as they speak, it's like a good movie where you pick up on things you missed the first time.

And speaking of comics (see "a", above), I should cut this one out and save it for when my kids are adults. They'll love it. I am this mom.
Rhymes With Orange

Son has been bummed because he and I will be apart on our favorite holiday. This Saturday is April Fool's Day. In my family, in each generation, a fool is born ... One person, in all the world, a Chosen One. One born with the strength, skill and power to play pranks on those who love him.

In the generation before me, it was my father. In mine, it was me. And in my children, it is my son.

There are very strict rules about being an April Fool as I explained to Son last year. 1) One prank may be played per person. Continuing to tell your little sister, "Look there's a kangaroo! Look there's a snake!" is not fun for her. 2) When the person calls your bluff "Oh, it's April Fools," you must 'fess up. 3) The joke itself can only last about 5 minutes. Any more, and you're being cruel. And the most important rule:

DON'T BE SURPRISED WHEN THEY PRANK YOU BACK. TAKE YOUR JUST DESSERTS.

Last year's prank on my poor long-suffering husband was killer. We had our house up for sale and had just recarpeted the entire house.

Note: a really good April Fool's Prank takes planning and preparation.

A week earlier, I had mixed up some school glue with a little brown paint. I poured it onto a piece of plastic wrap in a puddle and let it dry. Pulled it off the plastic wrap, and put it next to an empty paper coffee cup from our favorite coffee place. On its side. On the brand new carpet.

Learned something interesting: when I wonder if my husband is being passive aggressive when he does something like walk past his dirty socks on the floor 20 times ... no, he's not. He's that oblivious.

He was bringing in some sheets of laminate we were going to put down in our entry later. Walked past the cup and puddle 11 times. Never saw them.

Later, he and I were sitting in the living room talking about this and that. Suddenly, he yells, "Ohhhhmmmmyyyygodddddd" and flings himself across the room, not unlike someone shouting "fire in the hole" and jumping clear of a hand grenade. He had caught sight of the cup and puddle. He scooped it up ... realized it was solid ... realized he'd been pranked ...

... and said something unprintable.

Tee-hee.

Just the facts ma'am ...

Okay, enough angst and emotion. Here's the update on what's going on:

Next week is the biggie. Tuesday, CT scan. Wednesday, meeting with the surgeon. Friday, surgery. THE surgery. Removing the tumors off each kidney. (1 biggie per kidney.) As of now, the surgeon thinks he can remove them and leave working kidney on both sides.

Cardiologist thinks her heart can take the surgery. Oncologist thinks the chemo has done all it's going to do, shrinkage-wise. Which is to say, not much.

Me, I've got to make sure to avoid caffeine after noon, so that I can fall asleep when I go to bed. I remember there was some teen-slasher film in the 80's wherein the kids weren't supposed to fall asleep. Nightmare on Elm Street, I guess. If you fell asleep, the killer could get you in your dreams.

For me, it's if I can't fall asleep. If I have to lay there in bed for more than 5 minutes, they come ... horrible thoughts. I can almost see them, like worms, crawling up the bed. Ughhh. How's that for visualization.

They always involve the Worst Case Scenario. You would think that would be bad enough, right? Losing someone you love? Nope. It's what to do next. Last night, the spectre of making a decision on organ donation haunted me. I'm all for it, but one doesn't really like to think of it in connection with one's infant daughter snuggled up next to you. I was envisioning the whole scenario, and wondering if I could hold her again, and how the timing would work out, and then, there I am, sobbing in the dark.

When I woke up, I realized it probably wasn't even an issue, since she has cancer, and I think there are rules against such things. Why couldn't that logic visit me along with the worms? I guess Logic is busy sleeping while I'm suffering. Bastard.

I'm okay now. It's daytime.

The Cold Times

What they always say about Times Like This is that "you'll be on a rollercoaster of emotions." Ain't that the truth.

My experience has been that the traditional lows ... when you're weepy and everything seems dark ... are not the worst part. Those are expected. You're scared, and you're sad, and you don't know how to get out of the low. But it's kind of like surfing. (I'm guessing, since I've never surfed.) Eventually, a new wave is going to come along and lift you up.

What has been far worse, for me, are the Cold Times. If someone were to look at you, they would think, Ah, she's doing better. She's handling it okay. You look "together." You're functioning well, you're not crying, you can talk quite logically about anything.

Anything. And there's the rub. During the Cold Times, you can have the most horrific thoughts ... and they don't affect you. You are cold and emotionless inside and you examine these thoughts with curiosity. Hmm, if the worst happens, I guess I'll just get rid of my nursing shirts. Hmm, if the worst happens, we'll take the crib out of our room. Hmm, if the worst happens, I guess we'll just use her room as a guest bedroom.

Eventually, the thoughts are so stark, so horrible, that you shock yourself back into some semblance of feeling and are then horrified at yourself. "How can I think such things???" And in my case, I scoop up Little Warrior and clutch her tightly, kissing her little ole head over and over and closing my mind to any of those excrutiating thoughts.

Until the Cold Times come again.

'Tis better to say something stupid than nothing ...

That's one thing I've learned though this. Remember that whole "If you can't say something nice, don't say anything"? B.S., at least in this situation.

I know that in the past, I've been guilty of worrying that I was going to say something dumbass to someone going through a rough time.

But you know what? Silence hurts far more than anything stupid you can say.

I've been lucky. All the people that I'm really close to have been next to me since the second we were called to go to the ER with Little Warrior. I am blessed; I am rich in my friends.

But I will admit, there have been a few that have surprised me -- friends who I would have predicted would at least be dropping an email. Total silence.

I'm sure it's the whole "I wouldn't know what to say." But you can say that. In fact, the best thing I heard was when she was first diagnosed and my good friend MouseFace called and said, "I don't what to say except that this really sucks."

She summed up my feelings exactly.

If You Throw a Pity Party ...

...make sure you have plenty of food and drink.

That was the advice I gave a friend today who is going through a rough patch. And I have another friend, Anne, who hit a low on Monday and is feeling a bit blue.

Before All of This, I LOVED throwing parties. I am a bit famous for them, actually. Or infamous, I guess. You know the party scene in "Breakfast at Tiffany's"? That's always been my goal. But with more food, because I am a cook and a foodie.

Well, four kids later, our parties are similar to the scene, if you threw in about 1.5 children for every adult couple. Lots of sinful food, and a few non-sinful items for my vegan friends. Someone on the back deck playing guitar, kids up in the playroom wreaking havoc, pockets of great conversation all over, food and drink everywhere. And by about 9:30 pm, me somewhere teaching everyone how to do chocolate cake shots.

So, why should a pity party be any different? Of course, there's no need for guests, this is a party for one.

Necessary items for a pity party:

a) Dress: dress is beyond casual. Only the most comfy jammies will do. Barring that, then super soft sweats, or faded, loose shorts and a big tshirt.

b) Food: first, there must be something salty. And something sweet. Something creamy. Something crunchy. There we go, your four food groups. The sweet should, of course, be chocolate. Or, you can have chocolate as an adjunct, and have something else filling the sweet role.

c) Drink: A really good red wine. Or a dark beer, the better to go with chocolate. Now that I think about it, in college, some friends and I (after much testing) decided that the perfect snack was dutch chocolate ice cream, bavarian style pretzels and Shiner Bock. Ooh, looka that. Salty, sweet, creamy, crunchy and chocolate in only 3 items. Wait, how did I get back on food?

If one is not allowed to drink alcohol because a) it interferes with the anti-depressants, b) because it interferes with chemo, c) it comes through breastmilk and interferes with your baby's chemo or d) the court-mandated breathalyzer test you must take every hour, then one should drink either a) an egg cream, b) a real non-diet Coke or c) a bottle of non-alcoholic sparkling cider.

d) Entertainment: There are two schools of thought on this. One avenue to explore is that of really depressing movies. Sob along with Steel Magnolias, Beaches, Terms of Endearment, etc.

The other school of thought says who wants more tears? Rent something either really funny or really bad, or a combination of the two.

Happy Festivities!

Will the real superstition please stand up?

Times like this, you get real superstitious. I've knocked wood so many times, we got a letter from our neighborhood association instructing us to take care of our woodpecker problem.

Coupled with this is the fact that I don't know the rules of that many superstitions. Something about tossing salt over your shoulder. Or not looking at a full moon through the trees unless its over your left shoulder. So, I just go through my day, randomly tossing salt, hitting wood or a wood by-product, and twitching around to look at things backward. My neighbors think I either have epilepsy or full-body Tourettes.

The bigger issue is when you're not sure which way to go with superstition. Superstition-wise, leaving any possible logic out of it, does one talk about all eventualities, in the belief that if you talk about it, you ward it off? Kind of like buying tons of life insurance to guard against your death. Or should one not mention any negative outcomes, in order to not "open the door" to the possibility?

I vaguely remember a friend's Catholic Italian grandmother spitting when certain things were said. But I don't remember what kinds of things.

Oh great. Salt, wood, turn around and spit. Now my neighbors are sure to call the guys with the butterfly nets.

Obladi, Oblada 2

Early morning can be just as bad as night ... maybe worse, because you have no control. You wake up with a thought in your head that you dreamed or that is continuing from the night before.

This a.m. "If the worst happens, I need to get a copy of 'The Little Prince' for the service, because my copy is in French."

Ugh.

That was followed by loud barking and little girl screams, as Bo Peep and the Princess came down the stairs, startling the dog, who was in the house because it's raining, who began barking, startling the girls and making them scream and cry. That lives in the house that Jack built.

They came and got in bed with Little Warrior and myself. So, there I am, Little Warrior on my left, Bo Peep curled up on my right arm, the Princess lying slap in the middle of me. So I was vividly reminded that I am not just the mother of one.

The morning has begun, Teletubbies and Cookie Crisp (I miss being able to do the grocery shopping). It's raining outside, which I love.

Obladi, Oblada, Life Goes On ...

Reality is so much worse than my imagination

Tonight, we were watching "Cold Case" and The Husband noted, "I'm surprised you're watching this. You usually hate this kind of show." (Meaning: stressful, scary.)

Good ole escapism. Doesn't bother me a whit, now.

Before, shows like that were too much for me. With my crazy imagination, eek. I was scared of everything.

Now, I'm scared of one thing. And that's it.

Before, my imagination could pull up all kinds of dramatic, harrowing situations. A bump outside my window was the crazed murderer, coming to get us all.

Now, I am learning that little, seemingly insignificant things are far scarier, far more painful than the bogeyman my mind could conjure. A few minutes before my husband made his comment, I was stroking my baby daughter's cheek, her eyelids, her little lips, trying to memorize them. Wondering if I would soon be trying to remember what her skin feels like.

It's nighttime right now. Daytime, I am detached. I can think of such awful things, but in a very detached, unemotional way. If the worst happens, I think, what will we do for a minister for the service? (Our church is currently without). The two that I could call "mine" are unavailable; one is in the Northeast, and one is in Australia. I muse over options.

But at nighttime ... the guard is down. There is no detachment. I videotape Little Warrior playing with her siblings, making sure that I have each one videotaped holding her, making her laugh. I have to stop, my vision is blurry and the viewfinder is wet.

I wish I could take some sort of a sleeping pill, because when I lay down to go to sleep, that's when the worst of the demons arrive. My head swims with worry, with grief. Can't take a sleeping pill, can't even have a beer. Little Warrior is getting all of her nutrition from Mama and alcohol can interfere with chemo.

Please God, may next week's reality be so much better than my imagination.

Humor Knows Its Place -- Everywhere

ChaliceChick had a great post about humor. And you know, I could use a little humor right now. Before All Of This, I was quite into humor. Loved doing an annual humor service at my home church.

Well, actually, I still love humor, and it's amazing how you can find it in even the more dire circumstances. Like when my great-aunt died, and even though she had crossed every t and dotted every i, my dad still had to fax papers back and forth and sign things. It was capped off by the 25 page document he had to sign to get her body cremated. One of the many items in that document stated, that "I understand that this process is irreversible."

What??? said my father. "No, I figured I could just add some water and reconstitute her!"

Or at 11:30 pm, the night that Little Warrior came out of a 9 hour surgical biopsy that was supposed to be 3 hours ... we were in the recovery area and the pulmonologist wandered by. We noted that her breathing was a little rough. "Well, sure, you should expect that when you remove the top half of her right lung." Little Warrior was supposed to get biopsies of her *kidneys.* The Husband and I both began gasping for air. "Oh!" said the pulmonologist. "Not her! That little girl over there! Sorry!"

So, in the spirit of "I need a laugh" ... some of my favorite UU jokes. (Which do not include any of the "we have no raison d'etre" jokes.)

Why are UU congregations so bad at hymn singing?

Because they are always reading a few lines ahead to see if they agree with the words.

You may be a Unitarian Universalist if you think socks are too formal for a Summer service.

You may be a Unitarian Universalist if you know at least 5 ways to say - Happy holidays!

You may be a Unitarian Universalist if your idea of a guy's night out is going to a N.O.W. rally.

You may be a Unitarian Universalist if unleavened bread is part of your Easter Brunch.

You may be a Unitarian Universalist if you refer to construction paper as "paper of color."

If you find yourself rewriting a church survey, rather than taking it, you might be a UU.

If you call up your minister in the middle of the night, panicking because you are STARTING to believe in God, you might be a UU.

If, to explain your personal theology, you have to use interpretive dance, you might be a UU.

You may be a Unitarian Universalist if you take your day planner to church instead of the Bible.

Not always true, but still funny ... especially for those of us who have taken a very-Christian-not-UU person to church:

Fellow goes to a UU service for the first time, and later is asked what he thought of it. "Darndest church I ever went to," he replies, "the only time I heard the name of Jesus Christ was when the janitor fell down the stairs."

And to end, a great Dostoyevsky quote:

"If you wish to glimpse inside a human soul and get to know the man, don't bother analyzing his ways of being silent, of talking, of weeping, or seeing how much he is moved by noble ideas; you'll get better results if you just watch him laugh. If he laughs well, he's a good man...All I claim to know is that laughter is the most reliable gauge of human nature."

Of course, anyone who laughs at Gallagher, I regard with a high degree of suspicion. But I consider "Better Off Dead" to be one of the funniest movies ever made. And my parents think the same of "The Coca-Cola Kid," which left me and The Husband scratching our heads. What can I say, humor is subjective.

Things you want to say ...

Okay, I'm stealing this from Anne of Supposedly This Is Good Therapy:

List ten things you want to say to people you know but you never will, for whatever reason. Don't say who they are. Use each person only once.

1. Get therapy, already!

2. Hit rock bottom, already, so you can go sober!

3. He's a jerk. We all know he is. Hold him accountable or kick him out.

4. Tell me what you'd say if I were another doctor and the patient wasn't my kid.

5. You're controlling and a know-it-all, but I really love you, and wish we could just hang out and really get to know each other as people.

6. Go for a nerd. They're much better lovers than Mr. Cool.

7. I love you but you drive people crazy.

8. You are mentally ill, we all know it, and we don't believe anything you say.

9. Your son thinks Jesus is going to reward him for telling everyone my son is an evil wizard, because we're Unitarian. Do you really consider that to be Christian behavior?

10. Ummm, priorities??? Little Warrior has cancer!

I told The Husband about this little exercise. "Hmm, am I on there?" Nope, I told him, I tell you everything I want to say.

Whether he wants me to, or not!

Attitude isn't everything ...

...but it's something.

Okay, so we got the news today that Little Warrior will have surgery in two weeks. The breath was a bit knocked out of me; I didn't really think it would be that soon.

Here's the deal. I can look at it as "these could be the last two weeks of her life." Or, I could look at it as "two weeks from now, she could be cancer-free!"

Though I generally am a glass half-full kind of person, I don't have much patience with the "blow sunshine" people. You know, the "everything will be okay" people. The "God never gives you more than you can handle" people.

But this is just survival. If I take the cheerful view of things, and events wind up NOT cheerful, has that cost me anything? No. Will I be more prepared for the worst? No. The worst would be the worst and there's no preparing for it.

If I take the fatalist approach, would it mean that I would cherish the next two weeks more? Nope. I'd be weepy and sad. However, if I take the positive view, then I will be more cheerful, which means I can genuinely enjoy my time with Little Warrior and the rest of the family.

So, prescription for the next two weeks: lots of pizza, watching movies together, and getting ready for positive things.

Either a positive outcome will happen or it won't. Either way, I've had that two weeks.

Blind sided again

The cardiologist said that the problem with her heart ... which heretofore we had been told was simply because the tumors were squeezing everything up into her chest ... is cardiomyopathy, and not from the tumors. Not related to cancer. Just a little coincidence.

So, now, we are not only parents of a cancer patient, but also parents of a cardiac patient. And it's the same child.

Even when one knows better, one asks the question of the universe, "why is this happening?" Is it because I was greedy? I had three healthy children and I wanted one more?

I want to just feast my eyes on her and enjoy all the happiness I can ... but I cry. I cry because I *am* greedy and I want more than just this one moment.

More news tomorrow

Well, we had a good 4 day weekend. Little Warrior seems to be feeling fairly good. She's sleeping a bit more than normal, but hey, she had two scoops of chemo on Thursday.

I've been able to just enjoy the time at home, but now I have "Sunday night disease." If you've ever had a job you detested, you know that illness. You'd like to keep enjoying the rest of your day, or evening, but your stomach has that sinking feeling and a voice keeps whispering, "Tomorrow. Tomorrow."

Nothing horrible, tomorrow, just a potential for more bad news. We're meeting with the cardiologist. I don't entirely know what's going to happen. They might do an EKG, but the nurse today said they *won't* do another echocardiogram.

So, tomorrow is a "no eye makeup" day. In case there's any need to cry.

Painted Ladies 'a Trois

We have a lot of lantana in our yard that is now in bloom. Apparently, "lantana" is butterfly for "Viagra."

Just watched three painted ladies have a menage a trois. Butterflies, I mean. One got kicked out of the fun, and the two remaining flew off together, still going at it, up, up, up, into one of our skyscraper pine trees.

Now, how can you not be cheered by that?

Turn ON the Lights, the Party's Over

Pity party is over. Thank you for attending, please pick up your souvenir tote bag on the way out.

Two of my heroes threw a hand down into the abyss and pulled me up. Neither of them know they are my heroes (ewww, doesn't that sound like a cheesy song?).

I've never met her, or heard her speak, but I've been a huge fan of Rev. Christine Robinson for quite some time now. I found her sermons on the First Church Albuquerque site probably a couple of years ago. Thought they were brilliant, even printed a lot of them out and sent them to my parents. Planned on asking her permission to share some of them in our church's "new UU" orientation. (Hadn't gotten around to taking on the job of orientations when this began.) To a UU seminary geek like me, she's Elvis.

In a penultimate coincidence (most people think penultimate means "beyond" ultimate. I means "one shy of ultimate," or in this case, "we're both Unitarian and this blog is linked to some other blog sites"), the very Reverend visited my blog when I was feeling very lost and left a little comment to let me know I wasn't alone.

Isn't that just like a UU minister to be on sabbatical (I read her profile) and yet still ministering. To a stranger, yet.

Well, that coincidence propelled me enough out of my funk to go back to the UU Alb. site. Found a sermon I hadn't yet read, called Singing in the Dark.

It was about that time that the mail came, and with it, "The Essential Willie Nelson," cd.

I don't just like Willie's music, which I was raised on, but I like the man. I like what he does with his celebrity. I kinda think that if Jesus were to return, he might kinda look and act like ole Willie. At the very least, he'd hang out with him.

So, I'm reading the Rev's sermon about making it through the dark times, and listening to Willie sing "If you've got the money, honey, I've got the time ..." I defy anyone to stay in a bad mood listening to that song.

I'm sure I'm going to be sad again. But right now, the sadness is because of fear, fear of what I can imagine happening in the future. Today, Little Warrior is playing and squealing. We're having tacos for dinner and the kids started spring break. The Husband is bringing home a copy of the latest Harry Potter movie as a surprise. Classify these as good times.

Thank you, Rev. Robinson. Thank you, Willie.

sad

Before All of This, I was a Happy Person. Prided myself on it, actually. I was pretty good at making the choice to be happy, and then be happy.

I can't do it.

I'm so sad. And I just don't know how to stop.

Desperately seeking "Normal"

Oh my God, I miss normal. I miss it with every fiber of my being. I ache for it.

I didn't realize how much until today. First, we had a "not normal" day, though one that has turned into normal ... today was chemo day. Little Warrior was supposed to begin a new chemo (doxorubicin) but it turns out that the echocardiogram showed that her heart isn't working the way it should. (It's having to work extra hard because the tumors are shoving everything up into her chest.)

So, because of that, we need to hold off on the doxorubicin, because it can cause problems on down the line. She'll see a cardiologist next week, then the cardio will meet with the oncologist and the surgeon and they'll determine whether the risk is worth it.

But that's not what made me realize how much I missed normal.

Back at home, I was looking for something in the hall closet. Rummaging there, I came across all of her cloth diapers.

The last time I looked at one of her cloth diapers was before this all began. Since she's on chemo, she has to use disposable diapers now, since we don't want excreted chemo going through our laundry, staying in her clothes, etc.

It's not like the cloth diapers are that big a deal to me. But just seeing them, it was like when you smell playdough and are instantly transported back to kindergarten. Except I was transported back to "normal." A place where I could do such wonderful things as go to the grocery store, or meet a friend for lunch with Little Warrior and Bo Peep in tow.

A place where I could look at Little Warrior and just see a cute little baby.

Not *this* kind of attention

Okay, I'll admit it. Prior to this, I loved attention. Loved getting up and doing sermons, no shyness in the pulpit or the center ring. Sure, it's positive attention, right? And the attention I got -- though brief -- when I had the emergency appendectomy, well that was nice, too. Coupla casseroles, a few get well cards, nice to be nurtured.

But the attention for this ... I hate it.

I mean, I guess the alternative ... getting no attention, no one wanting to lift our spirits, bringing over casseroles and prayers ... I'm sure it would be worse. The one thing I have *never* felt in all of this is "alone." I am incredibly blessed to have friends who keep remembering me, neighbor ladies who have been bringing over little presents to "lift my spirits" (how thoughtful is that???), family that jumps to help even without us asking ...

But I don't like this attention. I don't like being "the lady with the baby with cancer." I don't like trying to appear upbeat and positive when almost-strangers ask me how Little Warrior is doing. I don't like writing thank you notes for all the little niceties that have been done. (And I'm normally an oddball who *does* enjoy writing thank-you's.)

Yeah, I'm grateful. And when I think about it all, I know that it *does* help me, *does* lift my spirits.

And maybe that's the part I really hate. That I need the help. That I need the attention.

Damn that Don Williams

Haven't cried about getting the news that the tumors haven't shrunk. Too much to do, plus, I don't want the children to see me weeping all the time. So I say, I'll cry after they go to bed. But after they go to bed, I get busy doing things, and going to bed.

So, I take Little Warrior to get an echo today. Am driving back home, idly singing along with the "classic country" station (the last good country music, with some exceptions, was the 70's, in my opinion). Get to a line from a Don Williams' song:

"...I should be thankful, Lord, I know I should. But Lord I hope this day is good."

Blimey. Tears are rolling down my cheeks.

Damn you, Don Williams! (shakes fist at the sky)

Babies With Cancer Resources

Specifically ... there don't seem to be any. You've got your "Make a Wish" foundation and "Sunshine Kids" and such, but they all require the patient to be at least 3. Which I can understand, they want to help the kids who can appreciate it. But babies ... and the families of babies with cancer ... have some different and specific needs.

So ... if I had the money to start a foundation for babies with cancer, what would it do?

Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...

What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.

Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?

OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.

Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.

Phooey on Statistics

Bummer.

Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.

So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.

The statistics, overall, for Wilms' look great -- 90+% survival.

However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.

So, 90% survival ... means 1 in 10 won't survive.

1/10.
1/10,000

I won't keep going with the math.

Classify these "Good Times"

I wonder how we will look back on this time.

Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.

But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)

Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.

As Willie Nelson sang, "Classify these good times."

Tomorrow, early

Ugh. Gotta get up at 5:30, in order to make it to the hospital by 7:30 for Little Warrior to get a CT Scan at ... 1:00??? Grr.

This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.