The Journey

Got fresh strawberries? Make these cupcakes!

2008-07-23T23:05:00.002-05:00

Well, Little Warrior and I are getting pretty addicted to taking cupcakes every week to clinic. My thighs, however, registered a complaint. No problem ... make cupcakes in a flavor I don't like; in this case, fresh strawberries.

I used this recipe for Sprinkles Strawberry Cupcakes, using fresh strawberries for both the cake and frosting.

The Husband practically swooned, and he's not that much of a cake person.

So, tomorrow we take 4 dozen fresh strawberry cupcakes to clinic.

And my thighs sent me a thank-you note.

Truth

2008-07-22T16:21:00.000-05:00

I have been mentally writing this post for a while now, unwilling though to sit down and type the words.

Truth has been a very straightforward concept for me for quite some time, and I have put its importance at the top of the list. Friends know that if I don't want truth, I will bluntly say so -- "Tell me this skirt doesn't make me look like a cow." Otherwise, gimme the truth. And I will give it to you.

But in some certain arenas, my opinion about truth is a bit more fluid.

My father tells of the time he had his tonsils out, as an adult. The regular recovery floor was full and so, ironically since he couldn't talk, he was put in a ward with men who had had eye surgery and couldn't see.

Each of them was bandaged up, completely blind. One morning, an janitor came through, cleaning floors and such. One of the men asked him, "Hey, what's it like outside?"

The janitor said cheerfully, "It is a bright and beautiful day, gentleman. Flowers are blooming and birds singing."

My dad stared, speechless both by surgery and by what the man was saying. Was he crazy? It was rainy and grey outside. Completely miserable!

The janitor went on, "Here comes a young mama walking down the street, pushing a baby carriage. Ooh-eee, she is switching her hips side to side, just sashaying. What a pretty sight."

My father moved his eyes from out the window and onto the faces of his fellow patients. They were all smiling, their faces lit up. Nodding. They could just see it.

---

What happens after we die?

The Boy asked me that, a few years ago. Actually, born UU that he is, I believe he phrased it as, "What do you think happens after we die?"

And he and I talked about different theories and agreed that neither of us had a strong belief one way or another.

The Princess and I have also had a few of these conversations. Never been a very pressing thing, more just interesting discussion. They've enjoyed stretching their minds to come up with all kinds of ideas.

And we always came back to a good-natured, "I dunno," followed by a smile and a laugh.

Life changes.

If I knew that LW was going to leave us, as a child ... if she and I were talking about the end, would I give her that kind of answer?

No. I can't. Between developmental stages, wanting to give her something good to hold on to ... and wanting to give myself something something to hold onto, I would not go with vague answers.

We would talk about heaven. And seeing each other again.

I'm getting some picture books. About heaven. So that she and I can talk about what heaven is like.

Maybe when she's 6 or 7 ... or when she hits 5 years off treatment ... we can talk about whether it exists.

Limitless Undying Love

2008-07-20T23:15:00.002-05:00

So, LE, how are you getting through all this?

Red wine helps.

No need to schedule the intervention ... yet. Truth is, there are other things that help more, not to denigrate the red wine, which has its place, especially a good Malbec.

The hysteric cleric asked me how I was "feeding" myself. Well, in general, I'm staying away from Niebuhr and even Spong. Anything deeper than Huffington Post isn't getting a lot of my attention. No offense to HuffPo. So much for the summer reading list I'd been making for myself before All of This, The Sequel.

I'm playing my guitar a lot. The internet means that you can find basic chords for just about any song (except Good Times, which I guess I'll have to find the sheets for), so I've been having fun playing old and new stuff.

Something about playing and singing a song means that you get more intimate with it than just listening. I've always enjoyed the Beatles' Across the Universe, but somehow I never stopped on the significance of one phrase from the song:

Limitless undying love which shines around me like a million suns
It calls me on and on across the universe

Limitless undying love.

Limitless undying love.

Right now, at this moment, that's as good a definition of God as I know.

2008-07-19T01:10:00.001-05:00

I feel lost.

I went to see Mamma Mia tonight with a bunch of my girlfriends. Good, good, good, all the way around. Ignore any bad reviews. It's a fun romp. Yeah, Brosnan can't sing, but that's just part of the fun. More to laugh at.

But I couldn't quite lose myself. I would escape for a moment and then think, I have to go back to that world.

It's not that I don't want to be at home, or even at the hospital, with Little Warrior. Really, truly. If she has to go through it, then I want to be with her.

If she has to go through it ... I don't want her going through it, plain and simple. When she went in for this last surgery, to examine the "spots" that we desperately hoped would not be what they were, after watching her go back to the OR, I walked to the food court area. On the way, I passed a young bald girl, pushing an IV. And I nearly fell down, thinking, "Please please please ... I don't want to go back to that world. I don't want to go back to cancer world. Let her be okay."

I'm back, and now it's all so normal that as I said to the BFF-DRE, kids with hair look a little strange to me.

I talked recently with other cancer parents about "chemo eyes." I don't know what causes it, but occasionally LW gets HUGE eyes. Cancer eyes. It's not just the dark circles under her eyes. Her eye color changes; they get darker and bigger. Other parents knew what I was talking about and agreed.

I feel like I have cancer eyes, too, but mine aren't dark and big. My eyes droop, they just feel so heavy. "Heavy with unshed tears" would be a quite poetic line, but I'm shedding plenty of tears. Plenty.

Mamma Mia is a romp, but I almost lost it, once. Meryl Streep sings Slipping Through My Fingers, a song about watching your daughter grow up so fast. Of course, I couldn't help by have a different interpretation ...

I have to sit down for a while
The feeling that I'm losing her forever...

Slipping through my fingers all the time
I try to capture every minute
The feeling in it

It's so so heavy. Looking at this sprite, because with her fine floss of hair, big eyes and impish grin, she looks like she should have wings on her back and be creeping around your garden in the early morning ... looking at her, getting smaller, I can't help the snake that enters my body and winds itself around my heart.

And if I'm going to be really, really self-focused (but I promised myself that I would be honest on this blog, which includes the bad and the ugly), I have to admit that there was also a bit of me sad at the movie because as Meryl Streep dances around, I know I can't dance right now. The free spirit, dancing, somewhat crazy hippie girl ... she doesn't live here anymore.

You'll be dancing once again and the pain will end

Maybe. I hope. Right now, it seems a million miles from here. It feels the heaviness won't ever end. And heavier still, I realize this might be the good times.

It might get worse.

Conquer Childhood Cancer Act Passes Senate!

2008-07-17T17:34:00.002-05:00

From Curesearch:

CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate

Children with Cancer and Their Families to Benefit from Legislation

July 17, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.

The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."

Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.

"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."

CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.

"The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.

"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."

"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.

Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.

To everyone who made a call, sent a fax, wrote a letter ... Little Warrior and I thank you. If we could, we'd give you a cupcake.

Music that hurts too much

2008-07-16T23:24:00.002-05:00

After addressing movies, Peacebang is now tackling music ... specifically, music that renders you wet and soggy, unable to hold the tears back.

Mine are -- mostly -- situation based. But man, they kill me. I can't hear them without tearing up.

Bridge Over Troubled Water. The Sunday after the levees broke in New Orleans, I was scheduled to preach at a church in another town. A town that was taking in Rita-evacuees. A couple of months before that, I had requested that the very talented musicians sing this song.

Oh, Lordy. It was too perfect, too raw, too right. I was completely a mess. Everyone else was, too, though. And a little old lady handed me a wad of toilet paper and whispered that my bra strap was showing. I will always love her.

Sunrise, Sunset. I remember when I was a teen, my mother coming home from a wedding and angrily complaining that it should be against the law for anyone to have that song in a wedding, because it makes all the parents cry. I'm a parent now, and I'm all for that law.

My Beloved Wife, by Natalie Merchant. I can't even read the lyrics without tearing up. My parents have been married 56 years. 'Nuff said.

I'm sorry, why I am thinking about songs that make me cry???

Okay, well, before I stop this insanity, I have to add one last song. The song that instantly was in my head when I read PB's challenge.

Canon, Pachebel. We had a 40 minute CD of Canon, one that I had used when I was pregnant with my first, practicing all those breathing exercises. I copied it to my iPod before Little Warrior's surgery when she was 9 months old ... the surgery that would remove a grapefruit-sized tumor from her right kidney and an orange-sized tumor from her left kidney.

She was in ICU for what felt like a million days, but as I recall, was about 3 or 4. It was so loud and busy in there. Not restful. She looked so pitiful, with about a thousand tubes coming out of her. I had some little speakers that I plugged my iPod into, and we put Canon on a continuous loop. 24 hours a day, for however many days we were there. Mmm ... mmm, mmm, mmmmmm .... Pachebel's Canon. Over and over. She seemed to sleep better.

It's a beautiful piece of music. But two notes in, and I cry. PPTSD. Pachebel's Post Traumatic Stress Disorder.

It Made ME feel better.

2008-07-16T10:30:00.003-05:00

Driving home from the hospital, I found myself behind a pickup that had three big magnetic signs on the back.

The first said:

Blacks own slaves in Mauritania and Niger.

The second said:

Affirmative Action is Racist.

The third said:

Affirmative Action Lowers Standards.

I hurt inside.

And then ... I slowly, carefully, changed lanes. Got ahead of the pickup. Moved back over, in front of him.

Me and my Obama bumper sticker.

What does love feel like? Sound like?

2008-07-14T21:06:00.003-05:00

Because Little Warrior is excreting chemo each time she goes to the bathroom, I have to clean her well with a baby wipe. At 3 in the morning, no matter the old trick of holding the wipe in your hand to warm it, it is still pretty cold. So, I ponied up 20 bucks and got her a wipe warmer. Everytime I pull a wipe from it, she smiles. Ahhh. Nice and warm.

That's what love feels like. A warm baby wipe, because Mama doesn't want you to have a cold tushy.

I have received several phone calls this week from the BFF-DRE. She sounded ... I dunno, kind of echo-ey. "Where are you?"

She was out in the middle of a lake, because she's on vacation and that's the only place she could get cell coverage. She wanted to check on how LW was doing, in the hospital.

And that, my friends, is what love sounds like.

What say you? What does love look like/feel like/sound like/taste like to you?

Wilms' Tumor -- in 1955

2008-07-14T10:23:00.002-05:00

from the diary of a mom

I had to skip over certain parts. Reading this while in the hospital was a bit surreal ... kind of like on a tv show, when everything goes hazy and the person goes back in time. The description of the ward, and the children ... it's very vivid. I had to blink a few times to get back to the present.

I won't say that Little Warrior is lucky to have been born at the time she was. Lucky would have been never to get cancer in the first place.

But definitely less unlucky.

I was touched by how universal and timeless certain feelings are. She writes about how soon after the initial diagnosis, she thinks that perhaps it would be better for her child to die in surgery than to go through the long process of cancer.

I vaguely remember a similar thought immediately after LW was diagnosed. By the time she got surgery, though, that thought had completely disappeared. I was greedy for each day I could get.

And when she was rediagnosed this spring, just after the two year anniversary of her surgery, even in my pain, I thought, well, at least I got two more years.

Must stop now. I am beginning to sink beneath the waves and this isn't the time nor place. And truly, at this moment, a bit ridiculous, as Little Warrior is munching bacon, watching Hannah Montana, and intending on holding me to the promise of a trip to the playroom. Chemo is at noon, so I need to get moving.

A real life visit!

2008-07-13T19:00:00.001-05:00

Well, today was a good day. For one thing, between the pre-chemo doses of Benadryl and hydrocortisone, plus changing to Etopophos (Etoposide, but different manufacturer), Little Warrior had no allergic reaction. Since the doctors this morning casually mentioned, "...and we might, then, need to move her to ICU ..." I am feeling much relieved.

While I was nervously eyeing LW for bumps, bites, hives, and anaphylactic shock, I had a most welcome distraction -- a visit from a real, live, Unitarian Universalist minister!

I'd heard that they existed, and even imagined meeting one, one time, myself, in Albuquerque. But looking back, it has taken on a dream-like quality. I chalked that up to eating too much green chile at lunch.

Well, I won't name names, but he was funny, kind, and generous with his thoughts and time. Funny -- a bit hysteric, some would say. Such a nice cleric.

We are in agreement about several things, including the fact that Philocrites is the Kevin Bacon of the UU set. No UU is ever more than 7 degrees away from him at any time.

In addition to being a cool guy, Rev. Visitor gave me a peek into the nurturing community that UU ministers create to support each other. It makes me feel good about the group I wish to someday join forces with.

Is that a little too Jedi?

2008-07-12T21:05:00.002-05:00

Sometimes, with this whole cancer thing, I think, "Well, it's a pain in the ass, but it's not this big tragic thing every day. It's not like the commercials for St. Jude's, with sweet sad music in the background, and quivering-lipped smiles. It's just doing what you gotta do to get past this."

But then occasionally, something will happen, like today, that reminds me that this isn't something like psoriasis (sister had it) or pigeon-toes, necessitating leg braces (me), or allergies (brother).

It's cancer. And it's scary. And it's bad.

Right now, she's awake, after her long benadryl-fueled nap. This might be a long night.

She's watching a Lazy Town DVD and licking a Ring Pop from the surprise bag. Doing what tons of other 3 year olds are doing right now. Except she's hooked up to an IV.

Right now, that really pisses me off. Because there's a lot of other things she should be doing. But she's busy.

Fighting cancer.

Looking out my window ...

2008-07-12T18:16:00.002-05:00

The Princess and Bo Peep have left, their "slumber party" with Little Warrior having been a welcome distraction for her.

A couple of hours after they left with The Husband, LW finished up one of her chemos and suddenly began breaking out in what looked like mosquito bites but, of course, weren't. No breathing problems, but her lips swelled and got a little purply.

Mama doesn't it like it when her chicks change color.

So, an allergic reaction to the chemo, etoposide, which is known to cause such things. No breathing problems, though. Tomorrow, we'll talk to the doctors and decide what to do.

Meanwhile, they hit her with both benadryl and hydrocortisone. She's sleeping now.

We are on a different side of the building than we've been the last couple of times. From here, I can see the other hospital we go to, the one for radiation. (Note to self: schedule followup appointment over there.) It seems strange to me that I can see it. I don't know why. I guess because hermetically sealed in here, it seems like outside isn't real, that it's just a backdrop someone has painted on our windows.

Our hospital has a small playground, and I can see it from here. We've been here since Thursday, and I haven't seen a single child in it. Not one. I thought about getting a pass for LW to go, then thought better of it. She has to stay on IV, and so it would be a "don't do that," "Be careful," "No!" sort of endeavor. I mean, how do you go down a slide with an IV pole?

Buildings, buildings, buildings here and cranes, cranes, cranes. An empty shell of a building that is being redone. A giant hole in the earth that is becoming a parking garage.

Nothing to see here, folks. Move it along, move it along.

I have friends, Cancer Parent Friends, in other cities and states. Some are at hospitals with beautiful views. One has a gorgeous view of the ocean.

Maybe it's better to have this view. Nothing to taunt me, to torture me. Outside, it's hot, and sticky, and there's nothing beautiful to look at.

I still wish I were out there.

Thoughts on a Hospital Room

2008-07-11T09:14:00.002-05:00

We are at a Children's Hospital. In our room, in addition to the patient bed, there is a couch-thing that pulls out into a bed-thing.

It is exactly like what was in my dorm room in college. Many of you would recognize it -- big wooden thing, twin mattress, slides in and out.

Because they don't provide food to parents, I have a dorm-size refrigerator that I tote up every time. It's worth the back strain, especially since it's not my back. The Husband adjusts his schedule so he can come unload all our stuff. I just loll around, waiting for him to tote that barge, lift that bale.

And I have my guitar. Last night, LW and I played an extended remix of "If you're happy and you know it," that included verses such as "If you're sleepy and you know it, close your eyes ..."

Yeah, that worked.

So ... here I am, with the hum of the fridge, sitting on my couch/bed, occasionally picking up my guitar, with a roommate who doesn't want to go to sleep at a decent hour.

Talk about your deja vu ...

There is a rocking chair in this room, as there are in all the rooms on this floor. This one has a gold rectangle that informs me it is in memory of Francis, 2007.

If LW survives all this, I'm going to donate something and put a huge plate on it that says, "In honor of LW who is still alive and going strong." I appreciate the sentiment of wanting to make a room more comfortable in memory of a beautiful child ... but sometimes, on this floor, you just really need to see something that says Children CAN survive cancer.

Actually, I just read something that said exactly that. It was a story about a girl named Michelle Nolan who survived the very cancer LW has. And this survivor is older than me.

One of the weird things was that in the book, the mother details the very worst day of her entire life -- June 20, 1969. The day I was born, a mother's heart was breaking over her daughter having Wilms' Tumor.

Anyway, you'll hear no complaints from me about our hospital room. Back in Michelle's day (and still, to this day) there are parents who can't even spend the night with their child. There are horrid things called visiting hours and wards and just a curtain separating you from another patient.

We have our own room, own bathroom. Because we're just here getting chemo, the only thing Little Warrior is hooked up to is her iv pole. No monitors. No hordes of students wanting to examine her. For the most part, we're left alone, other than vitals checks and changing bags of fluid and chemos. We watch tv, and play games, and have tea parties, and sing songs. And when the walls begin to close in on us, we grab Mr. IV Pole and go to the playroom, or on a walk, or up to the 16th floor if the library is open.

Tonight, The Princess and Bo Peep are going to spend the night. We'll have a girls-only slumber party. We'll go up to the 16th floor and I'll let each of them get one thing from the vending machines.

I'm telling ya, it's so much like college, I keep looking for empty beer bottles and pizza boxes in the hall.

Good Day!

2008-07-10T13:38:00.002-05:00

Well, we got here this morning and went for counts. She was at 290 last week, and needed to be at 1000 in order to get admitted to the hospital and given chemo. Frankly, I was expecting to be sent home.

9000! Thousand, not hundred! And then they said ... "And we have a room already."

We made counts! And didn't have to sit in the clinic all day!

So, we're in our room now, and I'm loving the coincidence that LW's counts were 9.09 and we're in room 909, when a cart comes by, pushed by a woman dressed in a hospital volunteer vest.

"Today is Thursday!" she says brightly. I look at her, blankly.

"It's pizza day!"

Oh. Yeah, we've never been given a room by lunchtime. Who knew?

So ... good counts, a fresh room, and a slice of pizza.

Classify these as good times.

The Novelty Has Worn Off

2008-07-08T22:13:00.003-05:00

Lizard Eater is feeling bratty.

Thursday, we're supposed to go in the hospital for a 6 day stay. Let me tell you, the difference between a 4 day stay, ending on Sunday, and a 6 day stay, ending on Tuesday, is much more than 2 days. I think it must be some sort of dog years thing. 1 hospital day = 5 regular days.

Bags are mostly packed. Well, except for clothes, they always are. At the start of all this, I cleaned out a closet, and it is exclusively The Hospital Closet. We get home, and everything goes in there -- dorm fridge, toy box, dvd bag, clothes bags. I wash the laundry and put some fresh stuff in the reading bag, but that's about it. A few more bribe toys in the the Bribe Bag.

(I have a friend who explains that it's not bribing ... bribing is when you give someone something in order to get them to do something wrong. We're just giving a promised reward for good behavior.)

Don't judge me.

So, is that why I'm bratty? Because I don't want to go to the hospital?

Well, not really.

Because what is worse than going in the hospital is not going in the hospital. Last week, LW's ANC was 290. It was to be 1000 in order for her to get chemo. No idea if it will be.

So ... the chance is great that I will bundle all of this into the car Thursday morning, drive over an hour, wait for a couple hours, only to find out that LW and I have to go home.

And if her counts are high enough ... then we wait. Last time, it took 10 hours waiting in the clinic before we got a room. We were lucky. Several others were sent home.

The boring, whiny, reality of cancer.

Feed Lizard Eater!

2008-07-07T17:57:00.002-05:00

Not literally. And please, no lizards, frogs, or anything else green and slimy. (That means you, okra.)

But tell me your ideas and food finds. We're (hopefully, if counts are good) going in the hospital for 6 days on Thursday. So, the criteria for your suggestions:

* I'll have a dorm-size refrigerator. No freezer to speak of.
* I don't have time/inclination to pre-cook an array of delightful dishes to take.
* I have a hot pot.
* I have access to a microwave.

So, does anyone have any suggestions of things that are tasty? Things where I don't have to take a lot of peripheral ingredients. e.g. Tuna salad ... I'd have to take mayo, and pickle relish, and spices.

I've looked in the grocery store. My, those shelf-stable Hormel things really look like dog food, don't they?

Will be taking: some pasteurized eggs and bread so that LW can have her eggy and toast. (The food is really bad here, so I take some stuff to supplement her schlock.) Oh yes, there's a toaster in the family room, too. But no toaster oven.

And cashew butter. And diet sodas for me. American cheese for LW. Ewww, I know. But it's something she craves. And pickles for the same reason. So, no, I won't have a lot of room in the fridge.

Coffee and my french press. And I'll be taking some ramen noodles to toss with homemade peanut butter sauce. So I'll premake if it takes 5 minutes or less. Mmm, comfort food.

In return for your suggestions, I have sacrificed myself and sampled the new Mint Chocolate Chip Frappuccino at Starbucks. Mint lovers, we now have a summer flavor. (And yes, it tastes different than the peppermint mocha.) I hate to ruin the surprise for you, but I will ... when they give it to you, it's covered with chocolate whipped cream. Swoon ...

Hi. I'm Satan. Happy to lead you down the path to diet ruin.

Valedictorians Gone Wild -- Speaking in another language!

2008-07-07T17:06:00.003-05:00

Quick question: if you attended a high school graduation and the valedictorian gave one sentence of her speech in a foreign language (and then translated it into English), would you:

a) Be impressed that she is multilingual
b) Be touched that she is communicating in her parents' tongue
c) Call for a policy that would require all commencement speeches to be in English.

(Shakes head and looks at shoes.)

ESP

2008-07-05T22:35:00.002-05:00

Do you have a relationship with someone where you are so connected, you know that there has to be something to ESP?

I do. My sister. Since I was about 15, we've been connected in such a way that when I was in my 20's, I used to joke that if I had sex, she lit a cigarette. Maybe we were connected before that, but if so, I didn't realize it. We are 16 years apart, so it's not like we grew up whispering confidences to each other late at night in the den.

Tonight, I just felt so low. So low, and without an immediately discernible reason. (I know, I know, my daughter has cancer. Believe it or not, you don't brood on that 24-7. At a certain point, it becomes normal and you get on with life. Until the next scans, anyway.)

So, I just had this overpowering compulsion that I must call my sister. I did and poof -- that's why the blue feeling. She is low.

We talked. And connected. But ...

Yet another dilemma of the minister ... the irony, that often you can't minister to those you love most.

If you're planning on making hush puppies today ...

2008-07-04T10:02:00.003-05:00

...don't. Make the below recipe instead.

If you live in the south, chances are good that rather than grilling, you're frying something, either fish or chicken. I will be frying up a mess of cornmeal-crusted catfish that my crazy uncle brought me about a month ago. (Tip: with frozen seafood, thaw them in cool water to which you've added a splash of vinegar.)

The natural accompaniment to fried catfish is hush puppies. But 'pups tend to be heavy. So ...

Getting Above Your Raising Hushpuppies

which you could also call

Deep Fried Jalapeno-Cheddar Gougeres

1/2 cup cornmeal
3/4 cup flour
4 tbsp butter
1 tsp. Salt
4 eggs
finely chopped jalapenos
small cubes of cheese

Heat oil to 375.

Combine the butter and salt with 1 cup of water in a medium sized saucepan and bring to a boil. Add the cornmeal and flour all at once, stirring rapidly over medium heat, and cook the mixture until it leaves the sides of t he pan and forms a compact ball. Continue cooking for three minutes longer, mashing the dough against the sides of the pan.

Remove the pan from the heat and, to cool the dough slightly, either turn it into the small bowl of an electric mixer and beat it for about one minute, or beat it with a sturdy wooden spoon for about two minutes.

Beat the eggs into the dough, one at a time. Continue beating until the dough is smooth and has a satiny look.

Mix in jalapenos and cubes of cheese.

Drop by the tablespoonful into fryer. Not too many; you don’t want to crowd your pan.

Cook til brown all over. (Don’t pull them out when they’re beautifully golden … the inside won’t be done.)

In the clinic

2008-07-03T13:59:00.003-05:00

"I can't complain but sometimes I still do." Joe Walsh

In the clinic, waiting on counts, waiting on chemo. Kinda crazy today, since tomorrow is a holiday. All the Thursday kids and Friday kids jammed together.

Brought up 3 dozen red velvet cupcakes. I have to admit, there is something very satisfactory about looking around a big room and seeing lots of people chomping your gift, even if it is a cancer clinic. Especially if it's a cancer clinic. Kids, parents, even nurses.

Tomorrow is the 4th and unless something unexpected happens, we won't be in the hospital. The Husband is off work, and The Parents are coming over for a fish fry.

Her scans were good, Little Warrior is busy eating crackers and drawing pictures, all I have to do is sit here and wait.

Why am I so fractious? So impatient? I've only been here 3 hours, which in Chemo time, is not much.

I don't know.

But tonight, I'll go home and since it's "Friday night" because of the holiday, I'll have a Hypnotiq Breeze or a margarita. Probably the breeze. It's blue. Patriotic, you know.

You can have one too. It'll take that fractious right outta ya.

The Husband's Hypnotiq Breeze
3 parts Hypnotiq
1 1/2 parts coconut rum
1/2 part pineapple juice
Shake with ice, pour, then add a splash of 7 up. If you're not a lightweight, use 2 parts coconut rum.

On Cupcakes

2008-07-02T14:03:00.002-05:00

Okay. You are my friends, so I'll share my secret about cupcakes. Or regular cake for that matter.

It's all about the frosting.

When it comes to the cake, I frequently use mixes. Not only do I think they're okay, in some cases, I think they're superior. Better texture.

Frosting, however, is a different story. The stuff in a can -- bleaugh. Too sweet, no real flavor, cloying texture.

And homemade frosting is easy. I'm not even talking about cooked buttercreams (which are, I'll tell you, completely divine) of the Italian or French persuasion. Plain old powdered sugar mixed with butter is a million steps ahead of the stuff in a can.

And here's my secret tip ... flavor your frosting with ... wait for it ... candy flavoring.

Candy flavoring is intense, lots of different flavors, and made to withstand the abuse candymakers put it to.

Watermelon frosting? Tangerine? Mmm.

I have drawn so many raves for Butter Rum frosting. Simple white cake, with a powdered sugar frosting, with butter rum candy flavoring.

So there you go. My tip to you. We'll keep it our little secret.

All clear!

2008-07-01T17:34:00.002-05:00

Nothing is ever that definitive, of course. But no new tumors. The skin on the kidney that had the recent surgery is "thick" ... but that, hopefully, is just scarring. They'll keep an eye on it.

Clinic chemo Thursday. (As opposed to In-hospital Chemo.) I love taking cupcakes -- put three dozen cupcakes in the family room and FOOSH they disappear. July 3rd, so red velvet, cream cheese frosting and blue icing stars.

Thank you for all the prayers and thoughts, Friends.

Icy cold fear

2008-06-30T10:59:00.002-05:00

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.

Lovely.

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.

Nature Girl

2008-06-28T22:36:00.000-05:00

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)

2008-06-28T11:38:00.002-05:00

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.