Monday, June 30, 2008

Icy cold fear

I understand why they call fear "cold." It is. Occasionally, I think about what is happening tomorrow, and I feel streams of ice-cold adrenaline shoot through my veins. Forget freon, you could run a fridge off a liter of my blood right now.

But today had a lovely start. Little Warrior loves eggy and toast -- strips of crisp buttered toast dunked into a salted soft-boiled egg. Because of being immuno-compromised, we haven't allowed her to have any. We explained why, but she was sad.

Then --duh! I thought of pasteurized eggs. After searching several stores, I found some this weekend. Score!

Last night, I told her that she could have eggy and toast for breakfast when she woke up. Her face lit up.

"Is cancer over???" she squealed.

Ow. "No, honey. But Mama found some special eggs and got them just for you! They're safe, so you can have a soft egg!"

This morning, she climbed on me, not-so-gently patting me. "You gotta get up! You gotta get up and make eggy toast! See! The sun is up! Day is here!"

Last night, The Husband put up our cheapy screened tent-gazebo. Hey, as long as it makes it through October. Little Warrior put the bread in the toaster and pushed the lever down. I cooked three perfect 4 minute eggs for Bo Peep and us.

We took it all outside and free from mosquitos, enjoyed our breakfast. You would have thought a soft-boiled egg was ambrosia, with the look of bliss on LW's face, as she ate delicate spoonfuls with the silver demitasse spoons we use just for this. We listened to the birds sing.


Tomorrow morning, not so much. LW and I will leave the house by 6:00, to get to the hospital by 7:15. She will drink glass after glass of contrast and (for the first time), we will attempt to get a CT scan without anesthesia. Today, she and I will practice holding still for 10 minutes at a time.

As of right now, our hope is that LW is cancer-free. That the surgery removed it all. That we are doing chemo and radiation in case there's any stray cells that escaped.

There is an inverse risk/result ratio going on. The risk that tumors will have developed while she is getting these high-powered chemos is small. But if they have developed, then the result is very, very bad. Because it will mean that they are so aggressive, getting chemo didn't slow them down.

Icy. Cold. Fear.

Saturday, June 28, 2008

Nature Girl

Despite what I call her on this blog, The Princess is actually a nature girl. Picking up toads, talking to any animal that crosses her path, and gardening. She loves to plant things.

Today is her 9th birthday. We are living in neutropenia land this week (Little Warrior's ANC = .54), so no friends are allowed over, no going out to eat. No problem.

She and The Husband got up and built a square frame for a raised garden, then went to the home improvement store and bought garden soil and plants. No flowers for this princess. Cantaloupe, strawberries, squash, zucchini, cucumbers and banana peppers. "But I have to share it, right?" she asked, second in a string of 4 children. Nope, we told her. Her eyes grew wide. "It's just mine????"

Truth is, none of her siblings shows any inclination towards gardening. My father always had a vegetable garden, my mother can't be anywhere for 1 month without planting flowers (today, she borrowed my digger fork to put some plants around their RV here) ... it must be a recessive gene, since only 1 of 4 received it.

Me, I'm a cook. I have a couple of pots of herbs in my window box, but that's the most of it. So, I made her this for her birthday dessert.

Time to open presents ... The Boy bought her a Hannah Montana wig. Her cup runneth over.

Me ... 9 years ago, I had my first daughter; someone so smart, so incredibly creative and talented that she can sit down with a sack of odds and ends and craft something beautiful, she can pick up any instrument and be able to pick out a tune.

My cup runneth over, too.

More on the Conquer Childhood Cancer Act (S.911)

Apparently the bill has had a "hold" placed on it by Sens. Coburn (OK), Enzi (WY), and perhaps
Senator DeMint (SC). This prevents it from coming to the floor for a vote. But as I understand it, the Majority Leader, Sen. Reid, can override the hold and get it to the floor. So send an email to him, too.

Several of my cancer parent friends were in D.C. last week, speaking to the congresspeople (or their aids.) We're all getting an intense lesson in how these things work. It's not as simple as Schoolhouse Rock taught us.

What we've learned: Sponsors are the ones who write the legislation. All a co-sponsor does is
pledge ahead of time that they will vote for it. There is no work or anything required to be a co-sponsor, it is just a pledge of support. So, by not co-sponsoring they are not pledging a vote so to speak. Most likely they are undecided or against (or possibly just too lazy to ask their aid to add their name to the co-sponsor list). The other reason co-sponsoring is important: the more co-sponsors the bill has the more obvious it is that it is bi-partisan and non-controversial.

In any case, as Jess says, write to everyone. Curesearch has a handy thing that will automatically draft a letter to your senator, and will note whether they are are co-sponsor or not.

Friday, June 27, 2008

Asking you for another favor

The Carolyn Pryce Conquer Childhood Cancer Act passed the House, unanimously. Now it's before the Senate. Here are the senators not supporting it.

Funding for childhood cancer research has been flat for 10 years. There have been no new cancer drugs approved for several years. Childhood cancer gets approximately 10% of the American Cancer Society's research monies.

What this means, in real life: Little Warrior has had a relapse of Wilms' Tumor. There is no approved protocol, and no new drugs, so the doctors say, Um, what do we do? Well, I guess we can try using the drugs that are used for another cancer. And that's exactly what's happening. Little Warrior is taking a regimen that has been accepted for Clear Cell Sarcoma.

If your senator is on the list for not supporting the act, please contact them. Please.

Related Link: Difference between childhood and adult cancer

Tuesday, June 24, 2008

Keith Olbermann outs himself as a Unitarian

I had heard the whispered rumors ... "Didja hear? Olbermann is one of us!" But it seemed there was never definitive proof. Tonight, chatting with Jason Bateman and David Cross on Countdown:

(Joking about a marriage between Bateman and Cross)

Cross: It's Unitarian.
Olbermann: Oh, good, I was raised in that faith. So there's just a lot of political talk, there's no religion ... okay, that's going to get me in a lot of trouble with my ancestors ..."
Keith, darling ... we forgive you. Come back home. You may find us a little changed. Occasionally we'll even say 'God.' And not just when we're cursing!

Monday, June 23, 2008

"When Will Cancer Be Done, Mommy?"

Little Warrior asked, on the way home from the hospital.


If everything stays on schedule (which I'm told, it never does, there's always an infection or low counts or something like that to push everything longer) and if the cancer is GONE and STAYS GONE and scans continue to be clear and her echocardiogram is normal so she can stay on the doxorubicin and not have to switch to carboplatin and everything just goes along swimmingly, then her last hospitalization should be the weekend of October 24, which coincidentally, is the weekend when we would normally throw our yearly Halloween party, but this year, of course, won't. And if all that goes fine, then we'll be out 4 days later.

"Halloween," I say calmly.

"Yay!" she says, having no concept how far away Halloween is.

Under my breath, I say, "Hopefully."

Sunday, June 22, 2008

Things to Buy for the Child with Cancer

I occasionally feel the need to post an informational post that is (hopefully) not for my regular readers and is instead for someone who might google a certain phrase. Like when I wrote about Breastfeeding a Baby with Cancer. Well, a year and a half later, someone googled that phrase, got in touch with me, and put her friend (who was breastfeeding a baby with cancer) in touch with me. I now have two new friends and -- fabulous news -- her baby is now doing very well.

So, now I'm doing it again. I hope that none of my regular readers will EVER be in need of this information. But here it is ...

Helpful Things to Buy for the Child with Cancer

Actually, this is Helpful Things to Buy for the Child with Cancer and the Parent of the Child with Cancer. It is a thin line between the two, often blurred.

Now, first question for the parent is whether their child will require in-hospital chemos or whether they'll all be outpatient. A lot of the stuff below is geared for the in-hospital chemos. But the DVD player you need, regardless.

For the child:

A Travel Wipe Warmer. Why: if your child is getting chemo, you're supposed to clean them after every time they pee or poop, because they are excreting powerful chemicals and as Little Warrior will attest, they make you itchy/burny down there.

Aww, you don't need to warm the wipes, you scoff. YOU wipe a 3 year old at midnight, 1:30 and 3:00 in the morning with a cold wipe and attempt to get them back to sleep and then we'll talk.

Posters: if the child is going to need to be in the hospital on a regular basis, making their room look a little less like a hospital room helps. Find out their interests, buy a few posters (Ebay is good) and -- and this is key -- get them laminated so that they can handle being put up and taken down over and over. Be prepared for sticker shock on the lamination cost.

Portable DVD player: really, this should be at the top of the list. Get one that is fairly lightweight, with a swivel screen. Not handheld. You need something you can prop on a hospital tray table or on an examining table or wherever as you wait and wait and wait. One that has a rechargeable battery and an electric cord.

Unless it's really, really special or requested, Child does not need: stuffed animals. Everyone (including me) wants to give stuffed animals because they're soft, and huggable and comforting. The problem is, after a few, Stuffed Animal Fatigue sets in and they're just tossed aside.

Little Presents: Nothing big or expensive, just little things that the parent can bring out at opportune times, such as when the child has just gone through a very painful searching-for-a-vein or when they've been in the hospital for several days and have decided they really want to go up to the hospital library, but you can't, because it will take another hour for the chemo to go through.

Two Piece Outfits: If the child is on chemo, then they'll have either a central line or a portacath. Either way, they'll need clothes with easy access. So, no onesies, overalls, dresses, etc.

For the parent:

A college-size refrigerator: a food tray comes for your child, but not for Mom or Dad. And you don't want to leave your child to go in search of a meal. (You really don't want to ... not just children either. We've had too many near-misses on wrong medicine or such ... I wouldn't leave an adult alone in the hospital.) This is also for kiddo. Hospital food is bad enough ... on chemo, bleaugh.

Book Light: self-explanatory, right?

Swiss Army Knife: well, my daddy taught me that a lady (or a gentleman) always carries a pocketknife, but in the hospital, definitely. You just will need one for all the myriad things that come up -- opening toys, slicing food, craft projects ...

Screwdriver: if there's not one on the swiss army knife. Toys sometimes mean batteries, batteries nowadays mean screwed-on doors.

As I think of other things, I'll add them to this post.

Friday, June 20, 2008

Driven to Fun

Two twin-size egg crate cushions are pushed together on the floor, topped by three sleeping bags and a 6, 9, and 12 year old.

Little Warrior's hospital bed has been lowered as far as it will go and shoved against the couch/cot thingy they give for parents. Together, it makes a somewhat uneven somewhat Queen size bed.

It's been a fun party. Barbeque and cupcakes, crepe paper streamers and balloons from a friend. Movies. Microwave popcorn and cokes.

And music! I got my coveted guitar and it's better than I imagined. Huh. I didn't realize how much my old guitar, well, sucked. We are not by any stretch of the imagination the Von Trapps, but we have sung together, Itsy Bitsy Spider and Down by the Bay and Little Boxes. Country Roads. Don't Worry Be Happy. Across the Universe.

And Hallelujah.

The children gave us their presents, homemade cards they each spent a lot of time on. They've enjoyed this. It's a party. For the most part, anyway. The Boy is past the age of innocence, in this world. He can't help but see where we are. The IV Pole. He was having a hard time and took a long walk with his Dad. Lated, he teared up and he and I went for a walk and talk.

"We're having a slumber party ... in a hospital! Because LW has cancer!" he said, anguished.

So we talked. And I told him that I frequently feel like crying. So I let myself feel it, and move on. "We have to be here," I tell him. "So which is better? To just be here, or to have a slumber party here?"

He agrees that having a party is the way to go.

I think that in addition to having special talents, we are born with things we are driven to do. Things we are compelled to do. Much to my mother's dismay, the compulsion to do things like clean my house or mop my floors is not something I was born with.

I was born with a compulsion to make fun. Thankfully, I found a mate with the same compulsion. And so, to the head shaking of our parents and more responsible siblings, we have always found ways to have fun. It is fitting that we have the same birthday. (Our first married birthday, our gift to each other was to go buy a Nintendo with our carefully saved dollars.)

Tonight, looking around the room at the streamers, the guitar, the almost-sleeping children, I'm not thinking about the undone projects, the laundry waiting at home. I'm thinking that maybe the compulsion to make fun is important, too. And I'm grateful I have it.

Good News

My friend got her daughter's scan results ... No Evidence of Disease. There's a little spot in her lungs they're watching, but they think it's just scar tissue and right now, are not worried.

AND, I heard from another Wilms' friend today and it was the thing you hear about but rarely see ... her daughter has been in very bad shape, things looking quite worrisome ... they did an MRI and couldn't believe it was hers, at first. Tumors in her belly had disappeared.

It is hard, sometimes, to believe in chemotherapy. Things like that rarely happen. More often, it is the experience we had -- surgery to remove the tumors, then chemo, then scans show that nothing new has grown. (Until it has.) You take it on faith that chemo is working.

When this happens ... it's magic.

I'll admit to being a bit bummed, waking up in a hospital room on this, the last birthday of my 30s. But then I got a thrilling thought ... what if Little Warrior gets all better, and when I look back on my life, the cancer chapter is restricted to the decade of my 30's?

I'm afraid even to write it. Knock wood! Knock wood! Knock wood!

Tonight, a friend of mine is bringing up my other 3 scamps. Their father is coming straight here after work -- well, after picking up barbeque and a birthday cake. We're going to have a slumber party, here in the hospital room. I'm pretty sure I'll be getting a new guitar for my birthday. (I've never had my own guitar, only hand-me-downs.)

We're in a hospital. And we're in the hospital because my youngest daughter is fighting cancer for the second time in her 3 years of life. But we'll all be together. And we'll have cake.

It's not perfect. But still ... classify these as good times.

Happy Birthday, Mr. Lizard Eater!

Look who's 40. Thank you for being the best friend, lover, and partner, as well as birthday buddy. But let's make this the last birthday we wake up apart.

And the offer still stands ... I'll share my full birthdate with you. You can wait til next year to celebrate turning 40.

p.s. Little Warrior says Ribbit.

Thursday, June 19, 2008

I can never tell what will prompt tears

We're in the clinic right now. Counts are good, so we're just waiting for a room. This can take hours. It has already taken hours, and will take more.

Wet eyes today. First, early this morning, when we stopped at the counter downstairs to get a pink-doughnut-with-sprinkles for Little Warrior. All of a sudden, her hair didn't just look thin -- it looked "cancer thin." Wispy and almost bald. And I could tell from the sweet and solicitous looks of the adults around me, they saw it too.

And just a little bit ago ... we were on the elevator. There was a big boy of probably about 10, wailing. As his parents carried him off the elevator, LW said, "Poor boy. Poor boy."


A friend of ours, whose daughter is in remission from relapsed Wilms', had her scans yesterday. She gets results today. We're in a different section of the oncology floor. I figure, if I see her (which means she walked back to our section), it's good news. If I don't ... it wasn't.

Whisper up a little prayer, wouldja?

If you're going to General Assembly ....

Tell some folks about, 'kay?

Wednesday, June 18, 2008

Why Torture Myself?

If I were a priest, I'd probably read Playboy. When I'm on a diet, I do read cookbooks, and not the low-cal ones.

Which all goes to explain why I went to the website for my seminary. Just looking.

On the homepage is the Spring Graduation picture. Couldn't help but wistfully wonder if I will ever be in that picture. Then, I downloaded the Fall schedule. I don't know why. Little Warrior will be in treatment, with hospital stays, through at least October. Not that my mind would be in the right place for classwork.

Of course ... perfect schedule in the Fall. I go to a small seminary, taking night classes. Getting classes I need is hard enough, getting classes I both need and want is a challenge. This Fall, it would have been easy.

Mope, mope, mope.

Well (shaking it off) ... you know, when I did this the last time, I didn't think I would ever go back to seminary, nor want to. So at least I don't have to struggle with that again.

But you'll have to excuse me. I'm going to go find some 19 year old who gets to go to school full-time and doesn't appreciate it. And pinch her.

Monday, June 16, 2008

Obama's Speech

I'll admit to being confused with the cynicism greeting Barack Obama's Father's Day Speech at a predominantly African American congregation yesterday.

As a student at a predominantly African American seminary, the issue of family and fatherhood is often at the forefront of any conversation about the serious issues we have today in our churches and in society.

In my Ethics classes, we had a prominent minister as a guest speaker first semester and a magistrate judge, second semester. Both were African American. Both spoke to the issue of fatherhood in the A A community.

Of course Obama spoke about this on Father's Day. Right now, he has the kind of popularity and respect to address big issues of the day. He, more than any other man in recent history, has the ability to help define what a "man" is to black young men. To not do so would have been irresponsible.

He acted like a leader, plain and simple.

Sunday, June 15, 2008

Two Fathers

I have two very different fathers in my life. My father, Daddy, and my children's father, The Husband.

When The Husband and I married -- just kids of 21 and 22 -- I would have sworn that the two were as different as night and day. Daddy reflects his southern, Depression-era, Calvinist upbringing. Quite strict, rarely emotional, never effusive. He loves the joke about the married couple, where the wife complains her husband never says, "I love you." The husband says, "I told you I loved you when I married you. If that changes, I'll let you know."

But when he does say, "I love you," to his kids or his wife ... you know he means it.

When my brother was about 4, my father explained to him that men don't hug and kiss. From then on, they shook hands.

He tried this with my son when he was 4, but The Boy just laughed at him, pushed his hand out of the way, and gave him a big hug and kiss. At 12, he still does. And Daddy loves it.

To The Boy, he couldn't hear Pop's words as anything but a joke, because his experience was completely the opposite. His own father was a man, and that man hugs and kisses and cuddles and wrestles and dances. Dances. Even with a big ole 12 year old boy, he'll obediently pick up any kid who requests it, spinning them around madly while they giggle hysterically.

My siblings and I very loved -- love - our father. But there was a good dose of fear mixed in, too. Daddy was The Boss and you didn't talk back, you didn't roll your eyes, and when he wanted something, you didn't walk to get it, you RAN.

My children adore their father and look at me bemused when I ask if they're ever afraid of him. The Boy ponders it ... "Well, if I'm in trouble, I guess ..." He and I discuss it. I use the phrase, "healthy respect," and his face lights up. Yep, that's it.

But at their core, both Daddy and The Husband are very alike. Old-fashioned in some ways, they have a strong sense of duty. They each have a strong opinion about what makes a man A Man. Responsibility. Treating others with respect. Protecting one's spouse and children. "Spouse" is chosen deliberately ... they both have friends with other Men who happen to be gay and don't feel their orientation conflicts with being A Man.

And, though I don't think either one would think to define themselves as such, both are feminists. My sister and I were up on the roof helping Daddy reshingle the garage as much as our brothers. Both Daddy and The Husband are fierce in their belief that their daughters can accomplish anything in life.

I can't write of the two of them without using the word integrity. Their word is their bond, and venturing into any grey areas of ethics isn't something they want to do. They eye askance the whole idea of "justification." They know how easy it is to justify what you want, and are therefore wary about it.

They both love old cowboy novels and that perhaps defines them as much as anything. They metaphorically wear white hats and love women, children and dogs, and expect other people to do right. They know who they are, but don't think that's important. They work hard, talk straight, and help others.

My cowboys.

Saturday, June 14, 2008

They Will Know Me By My Tshirts

I wear a lot of tshirts in the hospital. Comfortable, easy to clean, and wrinkles aren't an issue.

Apparently, establishing my identity is also a factor, a detail I realized today when repacking my hospital bag. I have a tshirt from my church, a tshirt from my seminary. I also have my Obama tshirt, but I have opted not to wear it. Finding common ground is more important when you're on the pediatric cancer floor.

I have my Mom tshirt, but I don't take it; it wouldn't really make sense -- "Who Are These Kids and Why Are They Calling Me Mom?"

And just in case you think that this is all an earnest attempt to deny the reality that part of my identity is Mom of a Cancer Kid ... this shirt, I do take:

Friday, June 13, 2008

Why I Don't Support Locks of Love

Okay, I've been meaning to write this post for a couple of years, but it seems like someone has always just cut their hair and donated it to Locks of Love, and I really didn't want to offend anyone, or make them feel bad.

Buck up, Lizard Eater. Tell 'em how you feel.

I love the idea of donating your hair to a charity. It's something so meaningful -- you're donating a part of yourself! And we girls, well, we've been raised on this notion. It's Della in Gift of the Magi and Jo in Little Women. It's putting someone else before your own vanity. It's lovely.

My problem with Locks of Love is that I think most people who donate are doing it under false assumptions:

a) Their hair will be used to make a wig
b) Their hair will be used to make a wig for a child with cancer
c) Their hair will be used to make a wig for a child with cancer, donating it to them for free

Now then:

a) Chances are good that your hair is either sold to a wigmaker or thrown away. (I read somewhere, but sorry, can't remember the source, that most American hair isn't good for wigs because we wash it all the time, use hairdryers, etc.)
b) The primary purpose of Locks of Love is children with alopecia. They donate their wigs to children with permanent hairloss, not the temporary loss caused by chemotherapy.
c) Not necessarily. For many, they are sold on a sliding-fee basis. One sends in an application, tax returns, medical diagnosis and two letters of recommendation.

Unlike some, I don't consider Locks of Love to be a scam. If you donated, you did a good thing. Children with alopecia deserve something that will make them feel more normal. (Although, maybe it's the Universalist in me, but I have an issue with requiring two letters of recommendation just for something to feel like you're a normal kid. But that's me.)

My problem is that there is a wide chasm between what people think Locks of Love does and the reality. Verisimilitude! This is one case where you can "blame the media" who don't even do the most basic investigation -- I mean, most of this information is on Locks of Love's own website. But the media continue to promote misinformation, such as in this article:
"...he and several members of their Unitarian congregation decided to grow their hair for Locks of Love. The nonprofit organization provides wigs for children who lose their hair during chemotherapy."
So, if you have long hair and you specifically want to help kids with cancer, what to do? Well, I have some answers.

1) Donate it to Wigs for Kids.
2) To donate it for an adult going through chemo, donate to Pantene's Beautiful Lengths.
3) Best yet: Sell it and donate the proceeds to CureSearch.

Rest in Peace, Tim Russert.


Thursday, June 12, 2008

Oh, the Universe Loves to Laugh

At me.

As I drove LW to her chemo appt today, I was mentally writing a blog entry titled -- no lie -- "I don't believe in unicorns anymore." All about how I used to be a fanciful person, unicorns, fairies and teddy bears, but reality has shown me something different.

And then I turn on MSNBC and see ...

A real, live, unicorn.

The Universe. Unfolding more and more lessons every day.

Wednesday, June 11, 2008

Bo Peep Keeps It Real

My middle daughter, third youngest child, turns 6 today.

Bo Peep is a wonder to me. She's the only one who looks like me, but she's not at all a mini-me. This kid is her ownself, carefully navigating her way through siblings and school and big scary dogs and cancer. She loves vegetables. Vegetables! She'd rather have a bag of broccoli than a bag of chocolate chip cookies.

Starting school this year, it was like watching a bloom appear on a bush that you already really liked, but had no idea it flowered.

She was -- is -- very shy. Kindergarten was completely overwhelming at first. The second day of school, I walked her to class and she clung to me, sobbing. I cried, too. I wanted, more than anything, to just scoop her up and take her home.

But she got used to school, and fell in love with it. Her teacher fell madly in love with her, as does everyone who gets to know her. Including (sigh) boys. A few months in, I was chatting with another mom and she said, "Oh! I know your daughter! At Michael's birthday party, all the moms (all-boy party) were talking about how their sons have crushes on Bo Peep."

Thankfully, she doesn't return the feeling. Yet.

One of the really neat things that blossomed in Bo Peep this year was a tremendous sense of humor. She is so FUNNY! She uses her truly angelic-looking face to twist into grimaces and monkey faces and characters. She sees silliness as an art form.

She was three when Little Warrior was first diagnosed with cancer. As such, she's basically always known cancer. It doesn't strike fear in her heart, it's just a pain in the butt. Cancer means having to wash your hands all the time, and seeing more of relatives, and not being able to have other kids come in the house and play. And then you get over it and life gets back to normal.

The Boy and The Princess both are more gentle in how they treat Little Warrior; they tend to more often give her what she wants.

Not Bo Peep. Puh on that! As far as she is concerned, her sister still acts the same ... she still likes to play Polly Pockets and have tea parties and watch Dora. She still grabs toys away and yowls when she doesn't get her way. So 'Peep cuts her no slack. That's a good thing.

I've got to go now, and frost her birthday cake. It is -- of course -- carrot. Happy Birthday, Bo Peep.

Monday, June 09, 2008

Oh, SNAP! Bill Moyers Turns Tables on FOX producer

Don't tell The Husband, but I might be a little bit in love with Bill Moyers. (It's okay, The Husband is a little bit in love with Christiane Amanpour.)

Found this on Huffington Post. A Fox News producer, Porter Barry, tries to ambush Bill Moyers, and the Southern Gentleman completely turns it around. Also enjoyable: seeing reporters chase down Barry, as he departs, tail between legs.

Sunday, June 08, 2008

The Little Stresses We ALL Have

Okay, first of all ... no need for apologies for complaining about petty stuff on MY account. As UUMomma said to me, we're not in a competition. Yeah, it's nice to think that Big Things Like This put everything into perspective, but they don't always. Even if you're sitting in the ICU with someone you love, it still hurts when you flip Entertainment Weekly the wrong way and get a paper cut. Yowch.

I mean, I'm right in the big muddy of it, and what is stressing me out? The fact that I have to find 100% free speakers for our church (preachers and talkers, not stereo equipment) and the fact that my house is a mess and the fact that I really need to do laundry and the fact that I had a filling fall out of my mouth last night, so I somehow have to figure out how to go to the dentist, and sooner rather than later.

So me? Perspective? Right at the moment, not really.

And that's okay. Because life goes on. Obladi oblada.

Friday, June 06, 2008

The Prayer in My Soul

A question that has been asked in several forms and by several people during the last few months has concerned Unitarian Universalism and personal crisis. What do we turn to, what gives us strength?

Well, like everything personal in this religion, we each have to find our own answers.

For me, I continue to find heart-healing in this faith. On the way to clinic or the hospital, I have been listening to Spirit of Life, sung by the Orange County Unitarian Universalist choir. (See iTunes.)

For me, Carolyn McDade's song is more than a hymn. It is a prayer that resonates deep in my soul. Quite simply, it keeps me going. It helps with the whole putting one-foot-in-front-of-the-other thing.

Here's what it means to me:

Spirit of Life, come unto me.
Come to me, God, the Universe, Transcending Mystery. It is so hard to hear your voice right now. Through these hurricane gusts and hailstorms of questions, sometimes all I can hear is a roar.

Sing in my heart all the stirrings of compassion,
Those who think of us, pray for us – help me to feel the love they send. Open my eyes to those around me who need my thoughts, my prayers. Exchange the bitterness in my soul for love and gratitude.

Blow in the wind, rise in the sea;
I can’t tell where I’ll be when the pain will come; as I go, step by step, on this road, the hurt comes when least expected, the confusion when I expect to feel calm. May that connection to All That Is, come also from the unexpected.

Move in the hand, giving life the shape of justice.
Take my hands, my voice, and give them the direction to do what is right. To not be blinded by my pain to the pain of others; may my hands help someone else to carry their burdens.

Roots hold me close; wings set me free:
May I turn to those I love, finding joy and comfort in them. Let me draw strength from the places I have already been and my own core spirit. Help me to escape that which drags me down, to see hope, to see the future, to see an unencumbered day.

Spirit of life, come to me, come to me.
Hold me. Hold me.

Stick to your specialty

Little vent here ... if you're not a friend, and not a religious/counseling/therapy professional, don't share your "wisdom" with someone going through something outside your experience.

Case: just got off the phone with a nurse from our insurance company. Apparently if you're going through a Really Big Thing, a nurse calls to see if you're getting what you need, healthcare-wise. Asks questions about diagnosis and treatment. Fair enough.

But, not once, but multiple times, she felt the need to offer editorial comment on non-medical issues. Like how children going through this seem to somehow understand more than we adults do, (ha*!). Or this gem:

Nurse: Well, how are your other children doing with all this?
Me: Well, it's hard. They're having to give up a lot -- vacation, summer camp, birthday parties (because of germs).
Nurse: Well, I'm sure that their little sister is their top priority and they understand why this is all necessary and they understand that this isn't forever.

Really? Really? Okay, in addition to the fact that you don't have personal experience with siblings and cancer, you apparently also have no experience with children, period. They love their sister, but this morning (first day of summer vacation), my almost-6 year old wants to go to the pool. And can't understand that her sister is neutropenic and so we can't go to the grocery store, let alone immerse ourselves in water along with tons of other individuals who might be sniffling, scratching a rash, etc.

In any case, this nurse did, once again, remind me of the #1, most important tip for pastoral care:

Shut up.

* BS. If that were true, I wouldn't be having to spend so much time trying to explain to LW why we have to go there, why I let them "poke" her, why why why. And she wouldn't be trying to "normalize" this through applying it to others, such as saying that her big brother was a baby when he got cancer. "No, honey, he never had cancer." Well, The Princess was a baby when she had cancer. "No, honey, she never had it." Well, my mama was a baby when she had cancer. "No, honey, I never had cancer. Only you."

But of course, this all stems from the erroneous belief that only saintly little children, wise for their age, get life-threating diseases. Because if that's the case, then we don't have to worry about our own little brats.

Thursday, June 05, 2008

Turn the blender on "blitz"

I am just a Cuisinart of emotions and thoughts and I need to accept that. And I need to accept that my brain is operating at, oh, 50% power. On a good day.

Like yesterday afternoon, when I had to call up my parents, who were supposed to come over for dinner, and explain that I had double-booked my evening. Or today, when I did the mental math of figuring out what time I needed to leave my house to get to the clinic and somehow made 1:00 pm appointment and 1 hour 15 minute drive = 12:15.

Up down turn around ... my double booking was to go see Sex and the City with my girls, my posse, my tribe. Whoo-hoo!

But was there a weird vibe? Were people mad at me or tired of me, or am I just wack? ("Wackity wackity wack," said the BFF-DRE.)

Got in late, up early to get the kids off for their last day of school. Last day of school! Whoo-hoo!

Had to say goodbye to AdventureGirl, who has given us a deck, labor, babysitting, and a month and half of her life. And so much more.

The Boy is going to tell a particular girl today, "I like you. May I have your phone number so I can call you this summer?" We practiced this about 675 times. He admitted to being petrified. I reminded him that he was smart and capable -- "Remember, you helped build the deck last weekend. You even used the drill!" And he proved that he can Speak Truth:

"Mom, power tools are much easier than girls."

I think that all the grown men I know would corroborate that statement.

Get to the clinic in time. Art project going on, yay. See a parent that I talked to about 6 months ago. Back then, even with a language barrier, she seemed to take great relief in me telling her merrily that yes, LW had had cancer, but she was fine now.

She spotted me, and smiled. Asked how LW was. I shrugged a bit and admitted relapse. She looked so shocked. I asked about her toddler daughter. She said relapse, too. I asked what they were doing -- chemo, radiation?

She said, "Nothing." There is nothing left to do.

We cried together.

LW has lost another couple of ounces, normal. I have begun giving her half-and-half when she asks for milk to drink. I've given up any hopes of losing weight and instead am merely hoping not to gain.

Now, she's been accessed. Such a mild term for "punching a needle through your skin into your port." They give us a cream that is supposed to numb the skin, rendering it painless. I'm pretty sure it's just a placebo for parents. LW is 100% sure.

One gets tired of holding one's child still so someone can cause her pain.

After clinic, we'll pop over to the HOV lane to get home fast. My parents will be there, bringing dinner with them. They will watch, bemused, as the children and I wildly dance to Alice Cooper's School's Out, our tradition for the last day of school. Later, we'll probably go out for ice cream, also our tradition. Rather than an ice cream shop, we'll go to a stand with a walk-up window and eat in the car. Less of a chance of germs.

Obladi oblada.

Tuesday, June 03, 2008


We should be leaving here in about an hour, going for home, but right now Little Warrior is snoozing while red blood is being pumped into her.

Not unusual -- after this round of high-duty chemo, her hemoglobin was low, so we're punching it up with some fresh blood.

Blood, I tell you. BLOOD. Someone else's blood is going into my baby's body. (Actually, several someone elses.)

I'm just agog, in awe of the significance of this. Someone went down to the blood drive, or blood mobile or what have you, rolled up their sleeve, and now their blood is going into LW's body.

She was a bit grey this morning. Now, her cheeks have pinked up. According to the head nurse-practitioner over here, it'll give her lots of energy. According to a cancer-parent-friend of mine who dropped by today, "Yeah, it'll give her energy. She'll be up til midnight."

Um, can I get a shooter of that?

I can't give blood, which bugs me to no end. I wanna be part of the cycle! If you can, and if you do ...

Thank you.

Monday, June 02, 2008

Only a mother would say

There are certain things that only a mother would say. I mean, that's the great thing about us moms. Maybe you've scaled a mountain, or won an Oscar, or invented the internet, but Mom'll still say, "Yeah, but remember when you were 12 and you put a hammer in the microwave?"

I'm guilty. I'm that kind of Mom. Really, I'm horrible. Ask The Boy. He was trying to open a bottle of mustard and being boneheaded about it (according to my friend SinglePowerMom), and he laughed and said, "Well, Mom's always asking how is it that I'm in GT classes?" (gifted and talented).

Okay, so I shrank 3 feet when she retold this, laughing. But shamefaced, I was laughing, too. Well, they have to have something to tell their therapists when they grow up.

Anyway, we were coming back from the floor playroom and Little Warrior started to climb into her bed. "You don't need to climb back in bed," I fussed. "You're not sick, you just have cancer."

Send those therapy checks to ...

Oh, and I'm sure she'll kill me when she's a teenager, but check out the latest video on Love Through Action. She says, "I fahhted." Tee-hee.

Lizard Eater. Embarrassing children since 1995.

Benefitting from cancer

Last Time Around, probably one of the biggest spiritual issues with me, one that I internally, externally, and vociferously railed about, was the concept that Little Warrior getting cancer would in any way benefit the world, let alone me, personally.

Rather soon after her initial diagnosis, someone said to me that this would make me a better minister.

Which just goes to show that "message" is not as important, sometimes, as "messenger." Because I did not take this well, and not only did it not bring me comfort, it probably precipitated ice-cold atheism running through my veins. Oh yeah? She is suffering so that I can learn? I suck so bad as a potential minister, I need my baby daughter to get cancer in order to form me into an acceptable candidate? The Universe operates in such a way that she will be sacrificed so that I can better help others, some day? The world will be a better place, because she got cancer???

It's all in the delivery; all in the messenger.

So last time around, I flatly refused for anything good to come of this. Because it felt like there was a backward message: that if something good came from it, that therefore was the cause.

Which isn't logical, but it's a pretty common fallacy. "See, it all happened for a reason!" (Just talk to Pastor Hagee.)

I found a way to make my peace with that. Because the truth is, we can learn and grow through every experience. That doesn't mean the experience was the only way for us to learn the lesson; it doesn't mean that lesson was worth it. And it definitely doesn't mean the lesson caused the event from which it sprang.

Still and all, though, it's hard. If I were the one with cancer, well heck, I would be the one paying the price, so any "benefit" I could get from it, bring it on!

When it's your child who has cancer, that just doesn't work.

This last week, my darling sister-in-law, AdventureGirl, brought one of her superfriends down and they planned out -- and purchased -- a deck for our backyard. She's very outdoorsy (she's a little boy, she'd rather sleep on the cold hard grown with bugs crawling all over here than be in a luxurious four-poster featherbed) and it was just killing her, having to tell Little Warrior, "No, you can't go out. The sun is still up." So, she decided LW needed a deck, pronto, with a popup screened gazebo, which she also purchased.

This weekend, friends of ours came over to help with the laboring. There's still work to be done, but we are almost in possession of a fabulous deck that will apparently outlast our actual house.

We have a deck! A fabulous, sturdy deck!

And it's because LW has cancer again.

You see the problem.

So, I think I've made peace, and for the most part I have, but it's still a struggle. This experience does bring with it some positives. We're getting to see more of family than normal. We get to meet really amazing people. All of us, friends and family, are more willing to speak of our love for each other.

And walnut butter. I mentioned the walnut butter, right?

And now, we've flat leaped into making lemon pie, with Love Through Action. Let the world benefit, in some small way, from this spunky, funny kid fighting cancer.

Because I know, and am peaceful with, the fact that no deck, no good deed, nothing othing wothing ... makes it worth it.

Sunday, June 01, 2008

Yearning for December

We've never had a cancer Christmas. I mean, technically, we did. LW's first Christmas, she had cancer. But we didn't know it. We were blissfully ignorant, happily innocent.

If all goes well (knockwoodpleaseGod), we should be done with chemo in October. Maybe November, if we've had to put off some chemos for low counts. But hopefully, we will be done by December. Hopefully, scans will be clear, she'll be off-chemo, things can be normal, by December.

As longtime Lizard-Eater-Readers know, I am a nut in December. Christmas, Chanukah, Solstice, Festivus, I love it all. The music, the food, the shopping, the holiday cards, bring it on.

Can you imagine how happily insane I'll be this December?

Occasionally, a bit of Christmas drops into my reality. The anesthesiology doctor giving us the tree made of propofol bottles. Or a tv station running a Christmas episode of something. Or a preview of a Christmas movie at the start of a kids' video. I get that whiff of a carol, and my heart lifts, Pavlovian.

It is June 1. And I am yearning for December.