New Music

I just discovered the Ditty Bops. Hooray for happy music.

It's been a good music week. Just downloaded the Joey Ramone version of Wonderful World and now a new band to enjoy. Oh, and the Burt Bacharach/Elvis Costello "Who Are These People?"

Neil Young ain't the only pissed artist. Pretty cool hearing the dulcet tones of a BB song with words like:

This stupid mess we’re in just keeps getting worse
So many people dying needlessly
Looks like the liars may inherit the earth
Even pretending to pray
And getting away with it

Hooray for musicians.

Hooray per pasta!

Huh. I babelfished "Hooray for pasta" in Italian, thinking it would be something cool sounding, like Viva la pasta or something. Nope. Hooray for pasta in Italian is Hooray per pasta.

"Le Big Mac."

Anyway, good day. Went and got (hopefully-prayerfully-knockwood-JuJu) Little Warrior's last blood count. And broke in my birthday gift, a pasta roller/cutter that fits my KitchenAid.

I am not in any way Martha Stewart. However, I really, REALLY like good food. So, for the last 16 years, I have spent quite a bit of time using my Atlas hand-cranked pasta roller/cutter.

OHMYGOD having an electric version is terrific. Frees up one hand, for one thing, making the whole process much simpler.

And for anyone who hasn't had homemade pasta ... run, don't walk, and get a roller/cutter. NOT an extruder. It's like a whole different beast than storebought. And if you do like I, and make semolina pasta ... well, the angels sing, the skies weep, however it goes.

We are being hopeful and thus, purchased tickets for The Husband to fly out at the end of July from and to New Mexico so we can go there to visit my parents. "But what about the results of her CT/MRI?" Well, we're hoping they're good.

Hey, what about that. We're being hopeful.

Alien Baby

Little Warrior is sitting on the floor, sock in hand, very happily and diligently dusting the bottom of the coffee table.

This is not behavior she is imitating from watching me.

???

Has LW been sneaking out of bed at night to watch "Martha"?

Birthday Season is Over

...thank God, my butt is begging for mercy.

It is hard to lose any weight when you have two birthday cakes each on four birthdays spread through May - June. For The Husband's and my birthday, he had peach cobbler and I had a sacher torte.

Anyway, today was The Princess's 7th birthday. 7 years ago today, my mother, The Husband and my always-will-be-childless-by-choice sister saw her born ... two hours after I arrived at the hospital, had my waters broken by some strange doctor, and then was informed, "Oh, we don't have any anesthesiologists in the hospital right now."

So, I can say that I have had natural childbirth. However, since I had to have it while strapped flat on my back (all the pain, none of the work-arounds, like walking), I can say that epidurals are marvelous things and I enjoyed them mightily on my next two births.

Can I get one now? No? Well, a caipirinha will work.

Made a "from scratch" cake, and it happens to be the same one my mom used to make for my brother, BigShot, every year.

Chocolatetown Special Cake
Ingredients:

* 1/2 cup HERSHEY'S Cocoa or HERSHEY'S SPECIAL DARK Cocoa
* 1/2 cup boiling water
* 2/3 cup shortening
* 1-3/4 cups sugar
* 1 teaspoon vanilla extract
* 2 eggs
* 2-1/4 cups all-purpose flour
* 1-1/2 teaspoons baking soda
* 1/2 teaspoon salt
* 1-1/3 cups buttermilk or sour milk*
* ONE-BOWL BUTTERCREAM FROSTING(recipe follows)

Directions:
1. Heat oven to 350°F. Grease and flour two 9-inch round baking pans.

2. Stir together cocoa and water in small bowl until smooth. Beat shortening, sugar and vanilla in large bowl until fluffy. Add eggs; beat well. Stir together flour, baking soda and salt; add to shortening mixture alternately with buttermilk, beating until well blended. Add cocoa mixture; beat well. Pour batter into prepared pans.

3. Bake 30 to 35 minutes or until wooden pick inserted in center comes out clean. Cool 10 minutes; remove from pans to wire racks. Cool completely. Frost with ONE-BOWL BUTTERCREAM FROSTING. 8 to 10 servings.

* To Sour Milk: Use 4 teaspoons white vinegar plus milk to equal 1-1/3 cups.


ONE-BOWL BUTTERCREAM FROSTING

6 tablespoons butter or margarine, softened
2-2/3 cups powdered sugar
1/2 cup HERSHEY'S Cocoa or HERSHEY'S Dutch Processed Cocoa
1/3 cup milk
1 teaspoon vanilla extract

Beat butter in small bowl. Add powdered sugar and cocoa alternately with milk; beat to spreading consistency (additional milk may be needed). Stir in vanilla. About 2 cups frosting.

DOUBLE THE RECIPE FOR THE FROSTING. Who are they kidding.

Menu bar code?

Anyone know of any good code for a drop down menu bar? I do web design, but am a graphics person, not a java person. I purchased from milonic.com but the menu bar is quite buggy, and it freezes on people running it on Explorer.

I officially "retired" from all this Little Warrior was diagnosed, but this was a prior client.

I wish the world would let me do nothing but tend to my sheep.

Welcome to life, kid.

Back to Our Regularly Scheduled Program

Okay, back to regular life.

Get back to regular life.

Get back to regular life.

Huh. 'S not working.

I'm getting paralyzed again. Okay. Raise your right leg up, bend the knee, extend it forward ...

This is how to walk ...

Breastfeeding a Baby with Cancer

When Little Warrior was first diagnosed with cancer, I searched everywhere for information on breastfeeding a baby with cancer. I googled all kinds of permutations of +breastfeeding +baby +cancer and all I got was articles about how if you (the mother) have cancer, you should stop breastfeeding. Or how breastfeeding could offer protection against you (the mother) developing breast cancer.

Not helpful.

At the hospital, which is a Children's Hospital, I tried to find someone who could talk to me about it, specifically, were there certain things I could eat that would help, or certain things I should avoid? The sum total of advice I received can be summarized in this quote from one doctor:

"Sure, you can go ahead and breastfeed."

Well, duh, Sherlock. If breastfeeding is best with a 'normal' child, I'm certainly not going to put a baby with cancer on formula.

So, for anyone who ever happens to google the topic, here's my experience:

My daughter was 7 months when diagnosed. She's 13 months now.

She was exclusively breastfed til she was about 11 months. We would have started her on solids earlier, but, probably because of the chemotherapy, she just wasn't interested.

I have breastfed in countless waiting rooms, doctors' offices and of course, in the hospital. Little Warrior even got one of her echocardiograms nursing. She was being fussy, and we didn't want to sedate her, so I hopped up on the table, put her on my lap, and latched her on. The tech had no problem doing her echo/doppler.

In the hospital, we had no problems. One nurse put a sign up on the door saying "Knock! Breastfeeding mother inside!" but that was a pain, since they'd knock, then wait for us to yell "come in." With a sleeping baby, not helpful. I'm discreet, so we just pulled the sign down. And I mean, come on. This is my fourth baby. Modesty went out the window 3 kids ago. I think a medical professional could handle a quick flash of boob.

We were pleasantly surprised that when we requested her hospital crib be replaced with a hospital bed so that I could sleep with her, they didn't even bat an eye.

We were also surprised that the lack of measurability of breastmilk wasn't a problem. After her surgeries, as soon as she had taken a certain amount of pedialyte, I was allowed to nurse her. They just weighed all of her diapers and used that for a gauge.

Only challenges: when she went through surgery, she couldn't nurse for about 4-5 days. As soon as you know you'll be in that type of situation, request a breastpump. No matter how stressed you are, pump. Make sure you're pumping every 3 hours. A friend of mine brought me up some "Nursing Mother Tea" and that helped. (Or just fenugreek tea.)

Other challenge: I had never gotten Little Warrior on to a bottle. Didn't really have the need, since I was a stay-at-home mum. The only time this was an issue was when we needed to get "contrast" down her or the pedialyte. Well, they make giant syringes that you can request. It's going to be a pain, and Baby is going to be mad at you, but it's better than doing an NG tube, in my opinion.

Whenever LW gets a CT scan, they sedate her. Coming out of that, they've never required her to do pedialyte. They just let her nurse. After she nurses for a while (with no throwing up), we're free to go.

End result of all this -- realizing that this is purely anecdotal: Little Warrior's blood counts never dropped below range. She was hospitalized once for infection, but it was probably due to e.coli being released in her system during surgery. (Very common.)

To my eyes, she got skinny, but the doctors never worried about it. And apparently the skinniness was due to the tumors eating up all her calories, because after the tumors were removed (but while still on chemo), she began gaining the weight back.

I'd like to take credit for any of that, but science just doesn't work that way. Who knows? Maybe it had nothing to do with it.

But, if you are breastfeeding your baby already and s/he has been diagnosed with cancer ... well, first of all, I send you a giant cyber hug. I am SO sorry you're facing that. But next, let me encourage you to keep nursing your baby if at all possible. I don't have any information on nutrition for you, other than to say be sure to drink loads of water and avoid alcohol, since it can interfere with chemo. For the first month or so, I also avoided caffeine, but I'll admit that fell by the wayside. I had about a cup of coffee every day. I say "about" because I make a cup of coffee, I lay it down somewhere, I find it later, I microwave it, I set it down, rinse, lather and repeat until I finally give up drinking it.

Good luck. God bless. Boobie love.

What Her Shirt Says

To Do List:

Beat Cancer
Learn to Crawl
Take Over Earth

She's done #2. Hopefully done #1. And judging by her sauciness, #3 is just a matter of time.

2Cool and Little Warrior

Okay, I'm only going to leave this picture up briefly, but it's just too cute, I had to share. This is Little Warrior expressing her delight at the new hair color of "2Cool" who used to babysit the other kids but is now either away at college or on some brainiac science internship. She came in town for the weekend, got her hair done and came out for a visit. How cool is that? 2Cool is just the most amazing young woman and this housewife is madly jealous over the purple hair.

Lion in the House, Conclusion

The Husband and I watched the conclusion of "Lion in the House."

WTF did we watch that????

It's a very good documentary. Extremely real.

WTF did we watch that.

A Blessing for a Plain-Brown-Paper-Wrapped Package

Huh.

Right as I'm questioning any sort of call to ministry, I get a request to give a blessing. To what used to be euphemistically referred to as a "marital aid."

Damn, God sure works in mysterious ways.

Tee-hee.

Note: I have been quite "Blue" this week. Interesting. Going from being "blue" to being "Blue." Quite possibly a sign of healing.

Or just being a 12 year old boy trapped in a 37 year old mother-of-4's body.

"Lion in the House"

Oh, and the first of two episodes of Independent Lens (PBS) with the "Lion in the House" documentary was good. All about childhood cancer, like I haven't gotten enough of that already. The Husband and I were bitchin' at the tv, since the description for tonight's episode said something about a family with a good outcome learning how to "be normal" again. I guess it's in the next episode because it sure as heck wasn't on this one.

Good show, though. Unflinching.

Sabbatical. Time Limit: Unknown.

I'm not going back into the pulpit. At least, not anytime soon.

Now that Little Warrior is hopefully-knock-wood-prayerfully-JuJu at the end of treatment, I have been contacted by some of the churches I do lay speaking for, about getting on their Fall schedule.

Have decided: nope.

I can't imagine getting in the pulpit. The only reason to stand up in front of a congregation is if you have something to say. For perhaps the first time in my life, I have nothing to say.

Maybe this will change.

Whatever.

God in the form of BusyLady

I have contended for a long time that where I see God is in the face of other people, and today God came in the form of my friend BusyLady.

BusyLady is, as you can imagine, a busy lady. She has enough energy for 10 people, and uses it for good, through her professional work as a counselor for hurt children, her volunteer work at our church, and through being an awesome mom.

She also lost one of her sons about 10 years ago. Acute Myelogenous Leukemia.

She came for a visit today, bringing her daughter to play with my hellions, enchiladas for my freezer, muffins and donuts for us, and incredible dessert for The Husband and I -- grown-up "Ding Dongs." Dark chocolate glaze ... yum. Stop your dirty remarks.

The last time she came to visit was when I had just received the call scheduling Little Warrior's surgery. I opened the door to her and burst into tears.

Happily, I didn't do that this time, though we both got teary at various times, having the conversation that only two people who have both gone through having a child with cancer can have.

She said SO many things I needed to hear. It was like being at the knee of the man on the mountaintop.

She is probably the most compassionate, thoughtful person I know, but she doesn't mind stating an opinion. Such as the whole issue of "things happen so we can learn lessons." F-- that! Yes, you can and should learn lessons along the way. But that doesn't mean it was worth it. Let me state that again ...

THERE IS NO LESSON THAT I LEARNED THROUGH THIS THAT WAS WORTH IT.

If I could take back the whole experience and not have the lessons, would I? Would we? Yup, we both agreed. In a heartbeat.

This part of the conversation came up because she recently helped put together a Mother's Day service with another friend. There was apparently something in it that said something about being a mother, and things happening so we can learn lessons. She swiftly changed that, explaining to the other friend, "This is very, very hurtful to any parent who has gone through a serious illness with their child."

Had I not gone through All Of This, I wouldn't have understood, either. That's one of those differences between being an adult and having cancer yourself, and your child having it. I know myself: I know that if I survived cancer, I would be like Linda Ellerbee, claiming that cancer was a gift to me, that it made the rest of my life better.

(As I've mentioned before, if I were not a survivor, I don't think I would consider it to be such a great gift.)

But if you're a parent, even if your child survives, you don't consider cancer to be a gift.

Well, there I go, attempting to speak for millions of people. Perhaps there are some parents who would disagree. But not me.

And not BusyLady.

I feel completely refreshed. What a wonderful gift she has. What a wonderful gift she is.

Identity

So, who am I going to be now?

Obviously, this has changed me. Fairly obviously, I will now also be looked at a bit differently by those who know of our past 6 months.

Obviously, I should be me.

Not so obvious anymore -- who is that, exactly?

You Say It's Your Birthday. It's My Birthday, Too, Yeah.

Tomorrow is The Husband's birthday.
Tomorrow is my birthday.

That's not a typo. Or a metaphor.

We were in college together, on the fencing team, when I found this out. Sitting around with other team members, eating Chicago-style pizza and drinking Shiner Bock, we were talking about genealogical signs. "I'm a Gemini," sez me. "So am I!" sez he, "When's your birthday?" "June 20." "Me, too!" he says in amazement.

I didn't believe him. Figured that was one of the worst lines I'd ever heard.

He showed me his license. I still didn't believe him. I'd never met someone who shared my birthday before.

It was such a gift from the universe, my b'shert and I having the same birthday. He's exactly one year older. I tease him that I was his first birthday present.

In truth, it is the other way around. From my 10th birthday until when I met him, my birthdays were not a real celebration. Three days before my 10th birthday, my 23-year old brother committed suicide. So you can imagine the feelings swirling around our home every year at that time.

Not that my family didn't try. In fact, on my 10th birthday, just the day after my brother's funeral, my other brother took me and two friends to see a movie. Superman. Won't ever forget that. How smart and loving was he, to do that?

Through the years, we'd have cake and presents, sometimes a party. But it always felt forced. I'm sure my parents would have loved to just hole up under the covers that time of year. But they pushed on.

So, you can connect the dots here. To share the same birthday with my best friend ... it gave me my birthday back. And every year, it's like a little gift from the heavens saying, "You two are special. You were meant to be each other's."

It's been a heck of a year. In only 6 months. But I had him to share it with, dividing the sorrows, multiplying the joys.

Happy Birthday to us.

Believe

On the Thursday morning post, in detailing what happens at a chemo appointment, I wrote:

Hold breath and say prayers that there is blood return after sticking the needle in her.

Well, here's what happens if there isn't any:

Move Little Warrior in all different positions trying to get blood to come back. Hold her down. Hold her up. Forward. Back. Arm up. Arm down. (All the while, LW is screaming her head off -- who wouldn't be?)

Pull out needle. Restick it in. Repeat the above. No??? Still???

Consult with nurses. Go to see doctor. Wait for doctor. Talk to doctor. Doctor says you have to reschedule and come back tomorrow for an alteplase treatment (Drano for your veins).

Come back the next day. Wait two hours. Get alteplase treatment and wait the necessary two hours. Repeat paragraph beginning "Move Little Warrior ..." STILL???

Consult with nurses who say Little Warrior will have to get her chemo via IV (bad). Wait. Nurse comes back and says, "We're going to try it one more time." Puts in more alteplase. Waits one hour. Nurse tries again, repeating over and over, "This will work, thankyouJesus. This will work, thankyouJesus."

Jesus responds and pink comes back through the tube. Then blood.

You love the sight of blood now. ThankyouJesus.

Get chemo. Drive home.

In the rush hour traffic, you flash back to that day in January, when you also sat in rush hour traffic. With Little Warrior in her seat. As you tried to get to the Children's Hospital because there was something showing up on an xray and holy shit they're saying it might be cancer. They're Saying It Might Be Cancer. If you repeat it enough times, maybe it will start to make sense. Maybe you'll be able to believe it. You couldn't stop crying.

You're not crying now. Little Warrior just finished what is hopefully-knock-wood-thankyouJesus her last chemo treatment.

They say the cancer is gone.

They say the cancer is gone.

They say the cancer is gone.

Maybe, if you repeat it enough times, it will start to make sense.

Maybe you'll even be able to believe it.

Not So Fast ...

Nothing bad, but we couldn't get The Last Chemo yesterday. Little Warrior's port didn't have a blood return, so we had to go get a chest Xray to make sure it was still in the same place. It was, so we go back this morning for altaplase treatment to dissolve the clot, then, after two hours, chemo.

But it's all looking good. The Husband asked The Oncologist about future treatment if it recurred, and The Onc said, "I'm not even thinking about that." Which is what we wanted to hear.

Fun with a baby in a waiting room ...

Hopefully, knock wood, pray pray, Last Chemo

Little Warrior is waving goodbye to the Teletubbies and softly saying, "Ba-ba!"

It's just to effing cute.

So, today's the day. (Hopefully) Last Chemo (knock wood) (please, God).

Her appointment is at 1:15. Here's how it works:

Get to Clinic. Sign in. Go sit down. Wait between 10 - 30 minutes. Get called back to sign forms. Go to Infusion area, sign in and sit down. Wait between 20 - 40 minutes. Get called back so that LW's port can be accessed and blood drawn. Hold breath and say prayers that there is blood return after sticking the needle in her. Loop up the tubes and securely bandage up her port site so she can't pull it out. Go back to the infusion waiting room. Wait about an hour while they examine her blood.

Get called back to see the doctor. Wait 30 minutes in the doctor's examining room, trying to keep LW from eating the ear-scope thingies or launching herself off the exam table. (Note to self: go charge up DVD player after this post.)

See doctor. Ask doctor list of questions. Realize that if doctor ever shows alarm, you're going to be really freaked out, because in all this, he's always acted quite laid-back. Nice man.

Go back to infusion area. Wait 30-60 minutes for the chemo to be prepared and nurse to bring it.

Get anti-nausea drug in port. Then a saline flush. Then Vincristine. Then Dactinomycin. The Zofran (nausea) is put on about a 7 minute drip, but the actual chemo just goes in with a push. Boom, boom. Saline flush. Heparin push.

Stop at the Candlelighter's Desk on the way out to see if there are any parking validations left. At $10 a visit, very valuable.

And there's our day. Oh, mixed in that is something very important:

Walk around with Little Warrior in the sling. Get oohs and aahs from all the nurses. Be told over and over that she's the prettiest baby in the world. Watch adults begin talking baby talk.

Long day? Yep. Any complaints? Nope. The fact that we live where we can get this, the fact the we have the resources to do so ... no complaints here.

Tonight, we'll be celebrating. "Going Off Treatment." Granted, "last chemo" has a better ring to it, but The Husband and I can't quite cross that superstition line.

On Caitlin Flanagan (phhhbt)

I just read Caitlin Flanagan's book "To Hell With All That" -- primarily because I'm a masochist who will read the two extremes of feminism and anti-feminism (I even read the Dr. Laura book, for cripes-sake) and bore my husband by shouting out "neither of these camps represent me!"

And, I will admit, there have been times when I've been surprised to find something good in a book that I thought for sure I'd hate. No, not the Dr. Laura book. It was stupid and mean, not surprisingly. But I read "The Surrendered Wife," the book darling of many fundamentalist conservatives and was shocked to find that not only did it make some good points, but I couldn't figure out why the fundies liked it. (I won't go into all that now. Just check it out from the library and give it a chance. It's more about "don't take on everything, allow your partner to genuinely partner with you" than surrendering. But you can see how her title is more eye-catching than mine.)

Anyway, so I checked out the Flanagan book, since it's getting lots of press. I did hate it, but not for the reasons I thought I would -- the press invariably picks up her quotes about there being something lost when Mom works -- but because it was such an odd book. The kind of book where you would think an editor would say, "Um, I don't get your point?"

Happily, since I don't have the time right now, someone has done a much better job than I at discussing this:

http://www.salon.com/books/review/2006/04/12/flanagan/index.html

More later, from the Feminist-Stay-At-Home-Mom-in-Tennis-Shoes.