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I'm tired of feeling scared.

I'm tired of being so effing fragile that the least little thing makes me cry.

I'm tired of losing my temper over small things.

I'm tired of feeling helpless.

I'm tired of weeping.

Tired of crying.

Tired of sobbing.

Tired of holding it in.

Tired of my heart hurting hurting hurting.

We're at the end of it and I'm so full of fear that we're not at the end of it, that this is just another pause before it all starts all over again. Again.

I want ... just once! ... to look at her sleeping and just think, "Awwwww," rather than

"Please God Please God Please God Please God."

I'm tired of being a drain on my friends, my family. Doesn't the universe understand that I'm supposed to be the comforter, not the comforted???

I'm tired of feeling self-centered and self-focused and self-ish.

I'm tired of feeling guilty for not being more appreciative, more thankful.

I just feel so fragile. And it's unfamiliar. And I hate it.

And I'm tired of having to stay up late at night because the only way I can go to sleep is if I push myself to complete exhaustion.

So tired ... but I can't sleep, the clowns will eat me.

FYI, Re: St. Judes

Just a little detail ... because until I entered Childhood Cancer Land, I didn't know:

St. Jude Research Hospital is not a "when no one else can treat you, come here," hospital. It is an amazing research hospital, but it is a research hospital.

What this means: if your child has relapsed for the second time, as is the case with a friend of mine, and all of your doctors are saying, "Err, we don't know what to do," the only way you're going to St. Jude is if they happen to have a study open that your child qualifies for.

Great hospital, not disputing that. But still and all, my money goes to Curesearch. (And Make-a-Wish and Candlelighters.)

I really really hate this effing disease.

Normal wish

The Husband is working from home today. Despite injunctions to "Pretend Daddy isn't really here," she just interrupted his work with a question. It was a very important question, you see.

"When cancer is over, can we go to the park?"

Everybody's Doing It ...

The Deist is. And Lazy Buddhist. And the BFF-DRE.

So ... okay. After putting up with (she says with a grin) the BFF-DRE sweating and stressing and drinking far too much Starbucks every November, I'm going to do it, too. Nanowrimo.

Little Warrior is supposed to end treatment on October 31. Perfect timing, that?

I will tell her story. No, that's not true. Only she can tell her story. I will tell my story, about her journey.

It is not about telling a story, or writing a novel. It's about dumping, dumping, dumping, all that has been inside me for the past 3 years. So that I can slow down the constant processing of it all. So that I can make some room in there for my others kids, and my husband, and oh yeah, me.

This might be the best therapy I can get.

Have a Beer, Save a Child

It's a strange world we live in, guys.

If you buy specially packaged Huggies diapers or Campbell's chicken noodle soup or even a pink ribboned Barbie, for cripes sake, some of the money goes towards the breast cancer cause.

There t'ain't much like that for childhood cancer ... but this month, if you go in a convenience store, you may see pumpkins from Coors up on the walls. That's because they're partnering with St. Jude's in this fundraiser.

Huh. Well, you know, a cold beer would be nice ...

Three Different Detergents

There are three different detergents in my laundry room. Tide, because that's what we use, Unscented ALL concentrate, because that's what my environmentalist sister-in-law bought when she was here, and Arm & Hammer, because my recently retired mother-in-law likes to be careful with the pennies.

I have no complaints ... I am not that wedded to laundry detergent. And the reason for the different kinds is because while I was in the hospital at different times, whoever was there washed our laundry. I'm grateful for their help. True, that.

But still and all ...

I'll be glad when there's just one kind of detergent in my laundry room.

True Story

Little Warrior is in my bathroom right now. She has climbed up the tub and onto the counter, where she can look in the mirror. She is looking at her eyes.

A few minutes ago, she was sitting in my lap. "Mommy, I can see myself through your eyes." Interestingly, she doesn't say, "I can see myself in your eyes." She says "through."

I use her phraseology ... "Yes, I can see myself through your eyes, too."

"I'm going to go look in the mirror." And off she trots.

She is back now. She shakes her head. "I can't see myself through your eyes in the mirror."

I pull her into my lap. "Nope. It only works when we're looking at each other."

She studies my face. "Okay," she says at last.

Obama good for African American talking heads?

I'm curious ... has anyone seen any analysis of whether Obama's campaign has been good for African American pundits?

It seems like -- especially on the Republican side -- that there are more African American faces on the tv, giving their spin to events.

Genuine question ... nuttin' snarky intended.

Edit: Okay, not just me ... New York Times wrote about it this past spring:

Like the Candidates, TV’s Political Pundits Show Signs of Diversity

A Long and Transcendental Roller Coaster Ride of Faith, Pain, and Love

I'm tapped out. I can't make adult conversation anymore.

So many different things this week ...

We went to Clinic on Tuesday, to be admitted to the hospital for a 6 day chemo. While there, at the suggestion of several of youse guys, I presented our Nurse Practitioner with a letter detailing our experience in the Emergency Room.

Apparently, this letter was shared in a big meeting, because over here in the hospital, both the hospital nurse practioner and a TPN nurse indicated that they'd heard it. So, it apparently got attention. That's good, and y'all were right to urge me to do it.

Tuesday night, watched the debate. And forget my former suggestion. I think, instead, that candidates should have to play the drinking game during the debate. By the end of the debate, they'll either have learned not to use canned terms, or they'll be falling down drunk. Either way, we win.

I'd been feeling pretty discouraged about church and ministry and the financial meltdown certainly didn't help that, the idea of spending thousands of dollars for seminary ...

... and then I had Wednesday.

In a weird convergence of the universe, I wound up having two HUGE conversations that include a lot about religion, with strangers -- a nurse and an art therapist. With them asking numerous questions about UU. Normally, I could go a year without that happening. Two in one day.

Both are fascinating women, with interesting life experiences. I am left with an old familiar feeling, that excitement I get -- People are so cool! I like people, with their different stories and different experiences. I'm not sure what it means, but suddenly, I can't wait to sign up for classes in the spring.

And the rest of the week ... up, down, up, down. Walking the halls, I pass a mother who has come out of her child's room looking frantic. "Is the priest here yet?" she asks the nurse.

Yes. What you think that means is what it means.

The BFF-DRE visits, bringing lamb beanie babies from her church. The three of us walk around the floor, knocking on doors and asking if there's anyone inside who would like a little lamb. LW holds up the beanie so they know we're not offering a gyro. It fills my heart, seeing how much LW loves giving these away. Even though I live in this world, I find myself on the edge of tears several times, like when she gives a lamb to a cute little pre-teen, who then offers her a set of sparkly bracelets. It's wonderful, and healing.

Last night, I get an email. A Wilms' family that we're close to has received bad news. The cancer has come back. This is the third time to face the beast. The doctor doesn't know what to do next.

And selfishly ... she did the same regimen that LW is on right now.

Today, we go down to the playroom. There is a group there from GE, helping patients make sock puppets, and serving a BBQ lunch. I am so touched that these people, these corporate folks, are giving up their Saturday for this.

LW has a good time, but mad when we have to go back to our room for chemo. Helping her onto her bed, she suddenly explodes with hurt and fury. I try to make out why. "What hurts, what's wrong?" She pulls herself together long enough to blurt out, "Cancer isn't OVER!!!"

Oh, babe.

She naps on me. The cool nurse from the other day is back. Her parents live in Galveston and just lost everything. Everything. Right after the storm, when they let folks back in, she had gone to help them clean out their house. A car pulled up to their driveway and a young man, just graduated from a school in Illinois, gets out. Joshua Perkins. She laughed and said he looked like Jesus -- kinda straggly hair, beard. He saw the news about Ike and felt compelled to come help. He only had $150 dollars, he said, but he stopped by his church and they gave him $500 for his expenses.

He said he came looking to help. M said that he worked his butt off for two days. He made miracles, cleaning up their yard, cleaning out their garage. They offered him meals. He politely said, No, he had a sandwich in his car. M offered him $100. He declined. She told him to take it to his church. No, he said, they had plenty of money. He said that if she was bound and determined to give it away, to give it to her neighbors. She did, in his honor.

Tomorrow, we get to go home. Only one more time after this, of packing up and going home.

Knock wood. Please God. ThankyoooJeeezus.

Who Wants Something Fun?

Don't you wish a music video's lyrics matched the video? Here you go -- "Literal" Take On Me ...

New Rule for Debates

"What's that game," I ask The Husband, "that one where you have a list of words you're not allowed to use?"

He doesn't remember ... I start to google it, then remember -- "Taboo."

"I think that in order to save the country from binge drinking, they should give all those debate-drinking-game terms ... my friends, maverick, middle class ... give those to the candidates like a Taboo card. And they have to go through the debate without using those words. If they use one of the terms, a loud buzzer sounds and they have to immediately shut up and pass to the other."

It'd probably be a really short debate.

Caregivers Needed

FYI ... if you have any church members or friends who are caregivers in a crisis situation -- taking care of a parent with Alzheimers, or taking care of a spouse who was in a car accident or, I dunno, taking care of a child with cancer ...

They have many needs. But the one need that they do not have?

"A need to feel needed."

I'm just sayin'.

--

* So, there is no need for you to come up with additional volunteer "opportunities" for them.

Cleanup in Aisle Four, Irv.

I just finished my day-before-hospital routine, doing the day-before-hospital shopping. There are three elements to this:

• Buy food for my family to eat while I'm gone.
• Buy food for me to eat in the hospital.
• (And then the hard part) Buy food that might possibly tempt Little Warrior once that chemo starts pumping. Fresh fruit? Junior mints? Sour candy? Nuts? It changes day to day, what will appeal to her.

So I trudge up and down the aisles, a neatly typed list for the first two, and a tendency to analyze every single item for the last. Hmm, halva? Japanese pickles?

Unlike normal grocery shopping, which I find kind of fun, this is stressful. I feel like there is a giant neon arrow above my head, "Her Child Has Cancer!" Of course, no one knows, or cares. I'm just another frumpy housewife, filling her basket with stuff.

My chest is tight and I tell myself, "Relax, Silly." My mother is home with LW, I'm in no rush, there's nothing that I *must* find. It's not like being in the grocery store the Wednesday before Thanksgiving, searching for the last can of cranberry jelly.

But I'm looking for that magical item that will make it all fun. My big fantasy is that LW will grow up and when talking about these hospital trips, will say, "You know, I just remember those being a party, Mom! We played games and had tea parties and ate yummy things."

No, that's not my big fantasy. That's my small fantasy.

LW will grow up. That's my big fantasy.

5 Things You Might Not Know About Me

Moxie wants to know 5 things people may not know about you. Here's mine:

1) I can wiggle my ears and my nose.

2) I just received my first payment for something (other than advertising copy) that I had written. Oddly, it wasn't a planned article. It began as an email and the editor wanted to turn it into an article.

3) My sophomore year, I ran for VP of the student council. I referenced this song. I ended my speech with: "I will lay it on the line for YOU!"

Note to earnest high schoolers: do not use the words, "lay," "balls," or "deep" in a campaign speech. You will be mocked. Severely.

I lost.

4) I lust to have a hidden room.

5) If you read a women's magazine in the 90s, you've probably read an ad I've written. Really purple prose about jewelry.

Alternative World

I want a world where there is no "spin alley," where a news station not only does not allow representatives from a candidate's campaign to speak on air, they don't even allow them in the building. And once you get a reputation for "spinning," you become persona non-grata and are treated the way a writer from The Globe (or whatever those "She's pregnant with an alien's baby") tabloids are called, would be treated in the White House press room.

That's the world I want.

Feeding our people

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

I just found out that a friend has left her Unitarian Universalist church to go to a Unity church. She still considers herself to be a UU, but her church couldn't give her what she needs.

This was striking to me because unlike mine, her church is large. Through my experience, I've seen that my church isn't equipped to help those members with a big need. I've sadly shrugged it off as "well, we're not big enough/not enough people/no knowledge/no minister" etc.

Well, in her case, her church is big enough, does have enough people, has two ministers ...

She went through a tough time, led by a seriously ill mother. After being the volunteer head of RE for five years, as well as doing countless other jobs, she needed a break, and she needed some nurturing.

"The only time anyone called," she said matter-of-factly, "was when they wanted me to do something."

Ouch.

I've tasted a little bit of that stew, alternating phone calls about Sunday services with phone calls from doctors, but thankfully, there was a call from someone at church "just to check on us," and even better, a note left on our door from the same person, right after the Hurricane with a phone number circled and "Let me know if you need anything!" scribbled on it.

I guess that's the message of hope I can give -- it doesn't actually take much. Just one person can make the difference between whether you feel that your church cares about you, or has forgotten you ... until they call to find out if you're going to help with canvass this year.

It's hard. Face it, there are churches that know how to do crisis. I know, because I hear about them from other cancer parents. Churches that leap into action, organizing benefits, setting up care schedules, putting those in need, as Rev. Marlin Lavanhar described in his sermon after his daughter died, in the very center of the community to take care of them.

My church doesn't have the time or know-how to do that. But I love them, and I have friends there who put food in my freezer, and met me for movies when I requested it. There is enough there to call me home.

That's the pastoral care issue. But then there's also the issue of religion.

A couple of days ago, Stephen of Reignite mentioned an episode of Desperate Housewives where Unitarians were mentioned. After all the tragedy she has been through, she has Big Questions. Stephen asks, "What if Lynette had gone to a Unitarian church? Would she have found what she was looking for?"

I imagine it would have depended on the church. For my friend, the answer was no. She wasn't hearing anything in the pulpit about the big questions. She felt that they did a good job challenging her, via community action, but she didn't feel fed.

Lacking a ministerial presence, after the first go-round with childhood cancer, I had an aching need to hear others ideas about those Big Questions. I am fortunate to be in a congregation that generally supports anything its members want to try, so I helped start some "Big Questions" covenant groups. I knew that in my fragile state, I needed some "space" to really hear people, with no arguing, so I formed one group as a "Deep Listening" group. No interruptions. No "discussion" per se. Speaking only from your own experience, and allowing a few breaths of silence after each person spoke. It was wonderful. Is wonderful. It FED me.

I don't have any real answers here. Part of the issue is letting people know what you need. The other part is whether they can do it or not.

Letting people know what you need is hard. We have every hope that we'll be done with all this at the end of October (knock wood, Please God ...) and will back to church in November. But in retrospect, and for your own edification in case you ever have a similar case in your church, here's my wish list:

a) I wish a Board Member had called me once we learned the cancer was back to say, "You are immediately released from all church responsibilities. Let's go over what you've been doing so I can make sure everything is covered."

b) Huh. Nope. "A" would have done it all.

p.s. In regards to "pastoral care" ... you guys have been awesome. You have comforted me on my blog, and your blogs have asked questions, provided answers, and nurtured my yearning for spiritual contemplation. I thank you, and honor you.

It's October

No, no need to run to your calendar, wondering if you'd missed a week or a few days. Let me rephrase it as, "It's October in my house."

I love October. I love the hint of fall, the decorations, the impetus to cook with pumpkin, the shows on tv, and of course, Halloween.

This will be the first time in my three daughters' lives that we haven't thrown a Halloween party. (Note: I would like on some of my posts from previous years about those parties, but eh, there's too many. If you want, just type in Halloween party in that search box up there.) The Boy has had one year without one -- we'd just moved to town and didn't know anyone.

Along with that, this weekend, I realized that Little Warrior and I are going to miss being at home for a third of October. 6 day hospitalization next week, then a four day, ending on Halloween.

So, in my position as O Exalted Queen of the Universe (at our house, anyway), I proclaimed that this past weekend began October. We got out the Halloween boxes. The party decorations are staying in the box for the year, but no fear, we have some nice little house geegaws. Happy little ghosts and jack o'lanterns smile at me from around the room.

It helps. I'm having a little bit of a hard day. I remember this happening after last scan, so I can just shrug and know that it'll pass. You worry so much about the scan, then you get the good news, and have that relief, and it feels good, but it's not something that permeates your being. Inside, you know that it just means they don't see anything. There are no guarantees. But its something. And even though it's a good something, you just kinda sink a little bit back into reality.

It'll pass. Meanwhile, as far as we're concerned, it's October.

You can't tell a Chinese Restaurant by its egg roll

OR ... Our E.R. scares me.

The conversation I expect to have in a couple of weeks with our genuinely Very Sweet Nurse Practitioner:

VSNP: I'm so sorry that you had to go to the ER. That's too bad. I hope the wait wasn't too long.
Me:

VSNP, I need to tell you this, because I need you to understand --

It's not about the wait. That's to be expected. It's about FEAR. I feel confident that most of your patients' parents who have taken their children to the ER at this hospital would echo my sentiments--taking our kids to this ER scares us to bits. If we judged this hospital by its ER, we would not come here.

Here is my experience: I drove into the parking garage here at 2:00 in the afternoon. I sprinted to the elevator with LW in my arms, but you know what the elevator situation is like ... when I got here, to the clinic, they said it was about 2:15. They called back and spoke to your nurses. They did not tell me to go to the ER, they said to wait. I waited. At 2:30, you and a nurse came out and said so sorry, but I didn't make it in time, so I needed to go to the ER.

In the ER, a couple of nurses came to our little room to access LW's port. They asked what size needle to use. Whaaaattt? This is not information given to parents. I held LW down while they put a needle in her port. They couldn't get a blood return. They removed the needle. They changed gloves, changed equipment. I held LW down again, her crying. They put another needle in. Still no blood return. There is a big bubble in the line, which, thankfully, they notice, so they decide not to push the saline. They remove the needle. My daughter is, understandably, more than a little upset. Finally, a third nurse comes in, an expert from the TPN department. She puts the third needle in through LW's skin into the port, as I hold her down, my heart crying as I whisper, "I'm sorry, I'm sorry" into her ear as she screams.

Instant blood return. I ask if it's slow. The TPN nurse wrinkles her forehead. "No, not at all." She looks at the ER nurses. They begin telling her that they think there was still contrast in LW's line from the day before. She asks why they think that. She looks dubious. She asks why I didn't just go through the clinic. I tell her that you said we were too late by 15 minutes. She shakes her head. She knows what the ER is like.

LW is hooked up to IV, her blood taken for testing, her standard Xray done. I take her to the bathoom a couple of times and it is filthy. I am afraid for her feet or more importantly, her IV line, to touch the floor. We are in the ER for 7 hours. The bathroom never gets cleaner.

At some point in the middle, the "doctor," (my guess is an intern) comes to give us the news that her counts are good enough for us to go home but um, erm, they screwed up and gave her the 8 hour antibiotic rather than the 24 hour antibiotic, and no, we can't go home and come back, and no, we aren't going to be admitted to a hospital room, but instead, we need to stay there til the 8 hour antibiotic runs its course, which will be around 1 am, then we'll get the 24 hour antibiotic, and when that's done, probably about 2 am, then we can drive home! Whoopie!

And it is at this point that I am thinking ... because we got to the desk at 2:15, rather than 2:00, we will be here until 2 in the morning.

And I am further thinking ... I think I would feel safer being treated by the doctors at (the local hospital for indigents).

We got lucky, if that's what you want to call it, because the ER actually called the doctors who do hematology/oncology and told them of their nefarious plan and the hem/onc doctors, God love 'em, said, No, just go ahead and give her to 24 hour antibiotic now.

(They've been pumping her full of chemicals for 6 months that could fell a cow, what's a bit of extra antibiotic?)

And that is why, VSNP, that is why you saw me look quite upset when you said that we were too late for triage, and had to go to ER. It wasn't because I was worried about the wait and being bored. Bored? Ha! It was because I was worried about the level of excitement I would be under, a fear that, once again, proved to be true.

15 minutes. Well ...

NO CUPCAKES FOR YOU!!!

Great News from a not-so-fabulous place

We're in the E.R. Little Warrior has a fever.

That's the bad news.

Her scan results came back. CLEAR. Her echocardiogram: NORMAL.

So that's the great news.

Scan-xiety

I am suffering from scan-xiety, a condition well-understood by other cancer parents and patients. Little Warrior has been fighting a solid tumor cancer, and as such, there's no blood test to see if cancer has come back. You just gotta use your two little ole eyes, heavily supplemented with by a CT scan or MRI.

For LW, it's a CT scan that encompasses her kidneys, abdominal area, and lungs. Wilms' recurred in one of her kidneys. The other common place is mets to the lungs.

So, of course, today she is coughing and telling me that her sides hurt.

The cough at least has a runny nose attached to it, so I can somewhat reasonably put my hands over my ears and say, "Nah-nah-nah" to that worry. Which doesn't mean she's clean, but I have other things to worry about, namely ...

"My sides hurt!" she whines. I ask her where. She puts her two little hands over her kidneys.

It could be gas. I could be the neulasta is kicking in and bone pain from her ribs makes her think her sides are hurting.

Or.

Well, tomorrow is scans. Tomorrow morning, we'll get up, no food or drink, go to the med center, she'll drink 3 glasses of really nasty contrast, we'll go to the hem-onc floor for a blood test to see how her counts are, then we'll go have an echocardiogram to see if the doxorubicin has hurt her heart.

Luckily, I don't have to take an echocardiogram tomorrow.