Tuesday, September 30, 2008

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."


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.

Monday, September 29, 2008

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.

Friday, September 26, 2008

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.
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 ...


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.

Wednesday, September 24, 2008


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.


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.

Tuesday, September 23, 2008

Hurricane Ike, Pt. 5

The Husband climbs back into bed at 7:00 am. There is a grocery store about 15 miles away that is up and working. He was there at 6 am and manages to get 8 bags of ice. When he tells me, I am as pleased as a pioneer wife probably was when her man brought home a fat deer. My husband, the ice hunter.

He also got another gallon of milk. This one we can put back on the ice after breakfast.

We have heard rumors that a garbage truck will come today. It won’t get any of the yard trash, but it will pick up all of the “household” trash. The Husband carries all our garbage out to the curb while I take a deep breath, and wade into the big freezer. First, I take a picture. Then, The Husband, done with the garbage, begins making a list of all the things we throw away, for insurance purposes. New Mexico chiles, mole enchiladas, homemade stock, soup … I don’t cry, but I’m sad. Less from the monetary and more from all of the labor I am throwing away. I like to make things and freeze them to eat later, like a farmer’s wife with her larder of canned vegetables and fruits. And our friends have brought us food for while LW is in treatment. I console myself that we’ve eaten most of these gifts.

A few things, like whole chickens, are still frozen solid. We keep those. Some are partially thawed, I put those in a cooler to cook today. We throw away 2 ½ large black bags of sausages, jambalaya, onigiri, and more.

I begin cooking. First thing, 5 lbs of seasoned chicken thighs. I have 10 more lbs of the same; they were on sale recently. I cool them, and mix with garlic that I roasted on the grill yesterday, mayonnaise from an unopened jar, chopped pickles. I can take some of this to the hospital with me tomorrow for my meals, and can leave some for the kids. I am overwhelmingly grateful for the ice we have.

Two bags of New York Times cookie dough balls, that had been carefully made, even more carefully “aged” for the requisite 36 hours. Heartbreaking to throw them away. Hmmm …

I turn off 2 of the three burners on the bbq grill, spread the area over them with foil and then parchment paper, and lay out some of the cookie dough spheres. I close the lid, checking it 15 minutes later. This can’t work, I know. I open the lid.

Looks like cookies to me.

I cook them a little longer, then let them cool. They’re warm and delicious. I cook up another batch, then go door to door to my neighbors, “Cookie Delivery!” They’re pleased to get big warm chocolate chip cookies.

Face it, if you have a sweet tooth, I’m a good person to Hurricane with. We’re all going to be 10 lbs heavier by the time the electricity comes back.

More cooking, like boiling up a whole lot of shrimp. And making burgers. I chop up the chicken and make chicken salad (with fresh-bought mayo) to take to the hospital.

The Hospital. Oh yeah. Last week, we were on our way to the hospital and we got a phone call saying, “Turn around and go back home.” Hurricane Ike has postponed LW’s chemo by a week.

In the dark, I pack. There’s not much to pack. Most of the bags I just left in the car from the previous week. No matter how tempted by the clean underwear, I stayed away, so that I could have clean good clothes at the hospital.

Tomorrow, I will have tv, wifi, air conditioning. For once, my family is envious of LW and I as we plan to go. For us, the hurricane is over.

Well … Hurricane Ike, anyway.

Saturday, September 20, 2008

Hurricane Ike, Pt. 4


The husband got up and got to the grocery store right when it opened, because he’d been told by a store employee if he got there at 8 am, he could get ice.

Two problems: 1) the store opens at 6 am and 2) the icemaker is broken and only makes one bag of ice every 15 minutes.

He did, however, score a gallon of milk. With no way to store it, we again get the children to drink their fill, then make cocoa with the rest of it to store in hot thermoses for later.

We pick up around the house, just trying to keep the internal chaos at bay. There is chicken breasts marinated in pineapple juice in the freezer that have mostly thawed. I cook them for lunch. They’re delicious.

In the afternoon, a neighbor comes to invite us to a cul de sac barbeque that night. I remember the 3 dozen dark chocolate with salted caramel filling cupcakes in the big freezer and give up my hopes of taking those to the hospital. There’s no way they can make it til Thursday. They’ll be our contribution to the “party.” Besides, it’s time to face the music and open the big freezer.

I’d had hopes that the freezer would still be mostly frozen, as we hadn’t opened it at all, and it had been chock full. Wrong-o. Already, several bags of homemade stock are completely thawed. I remove them, remove the cupcakes, ascertain that some of the other stuff was still frozen, and close the door. I’ll deal with it tomorrow.

Two of our neighbors have pulled their grills out to the curb and are cooking away. Grilled steak, grilled porkchops, ribs … eat your fill. After answering the question, “How did you make cupcakes???”, the cupcakes are enjoyed all around, even by my skinny, perfectly polished neighbor. (Who is also perfectly sweet.)

It is just a little darker than dusk and kids are throwing a football around. No surprise, the football goes afoul and crashes down in my lap, tossing my wine on me. The bugs are biting me through the bug spray, so I scoop up Little Warrior and head in.

Hurricane Ike, Pt. 3

I wake up early, as I will every day this week. A cool breeze wafts over me from the window. Little Warrior has climbed into bed between us during the night. She cuddles her body into mine as the breeze touches her.

Things are beginning to get warm in the refrigerator and thaw in the little freezer below. We give the children cereal and milk, urging them to drink up. I take the rest of the milk and make cocoa, putting it in thermoses for the evening.

The day is pleasant. The cool front has come in. During “normal life,” this would be the day I’d get excited, filled with that autumn feeling. It still thrills me, but this time, because the cool front is our air conditioner. I open the windows that have intact screens, giving dirty looks to both myself and The Husband for not replacing the torn screens already.

We make sandwiches with cold cuts and cheese. What we don’t eat, we throw away, since the ice is melting and we don’t know when we’ll get more.

I have a bag of shrimp that has partially thawed and cream cheese from the fridge. And cream. We have a gas stovetop and I make a sumptuous dinner of shrimp alfredo over penne. We eat out on our deck, staying carefully away from where a thick tree branch drove through one of the boards. While the family is finishing up dinner, I make dessert inside. I mix up a cake mix with some of the softened butter, buttermilk and eggs from the refrigerator. I pour it in a non-stick saucepan, cover it, and cook it on low on the stove. When it’s “baked” up, I drizzle on some of the various sauces we’d had in the fridge – caramel, fudge. Everyone is very impressed that I made a cake and I feel proud of this small triumph.

When we come in, the house is dark. The Husband and MIL promise to clean the kitchen in the morning. It really would be impossible to do it by flashlight.

We read more of Little House on the Prairie and go to bed. The children all want to sleep in the living room in front of the open window. Since they can’t turn on lights, I think it’s more about wanting to be together than the cool night air.

Friday, September 19, 2008

Top Ten Reasons Hurricane Season Is Like Christmas

I'm sitting in the hospital, reading that our electricity isn't scheduled to come on til after next Thursday, and hearing that Bernanke made the faces of all the congresspeople turn white because complete financial breakdown could be imminent, and I'm kinda feeling like I'm living The Day After and I got this email from a friend, so ...

Let's take a Humor Break, shall we?

Top Ten Reasons Hurricane Season Is Like Christmas
Number Ten:
Decorating the house (even if it is with plywood).

Number Nine:
Dragging out boxes that haven’t been used since last season.

Number Eight:
Last minute shopping in crowded stores.

Number Seven:
Regular TV shows pre-empted for ‘Specials’.

Number Six:
Family coming to stay with you.

Number Five:
Family and friends from out of state calling you.

Number Four:
Buying food you don’t normally buy . . . and in large quantities.

Number Three:
Days off from work.

Number Two:

And the Number One reason Hurricane Season is like Christmas:

At some point you’re probably going to have a tree in your house!

Hurricane Ike, Pt. 2

The rain is even heavier today. Our cul de sac fills up, waves lap across it, crashing on our yards.

It is hot. They say a cold front is on the way; that’s what caused this rain, not the hurricane.

The rain stops midday. MIL, The Husband, The Boy and I go outside to begin clearing away all of the branches. It takes several hours to drag branches into a pile in front of the house, break up smaller branches, rake up and bag tons of pine needles. “It smells like Christmas,” notes The Boy. Except for the rivers of sweat rolling off us.

We finish up and make plans to take showers, washing off not only the grime, but any possible traces of poison ivy.

A neighbor comes over, offering us the use of his gas-powered chainsaw. He and The Husband discuss its workings – I heard snippets about “the choke” – and The Husband goes out again. I stop him and tell him that his safety goggles are on his tool bench. He promises to use them and further promises not to cut off anything that is attached to his body. I tell him I’d appreciate that.

I head into the shower. While in it, Bo Peep comes and tattles: “Daddy’s not wearrring his goggles!” I tell her to tell her grandmother. I finish up my shower with cold, cold water to keep the heat at bay.

Through the living room window, I see The Husband, wearing goggles. MIL explains that she went outside and told him all about when she had the torn cornea that lasted 3 months, worst pain ever, including childbirth.

A mother-in-law on your side is priceless.

The Husband finishes and comes inside.

All showered and clean now, we move as little as possible, reading books, listening to the radio, as people call in from all over the city, telling their stories to the tired deejays. With a flashlight, I begin reading Little House on the Prairie to the children. By the time we reach Chapter 5, they are asleep.

Thursday, September 18, 2008

Hurricane Ike, Pt. 1

Friday Sept. 12, 2008

We’ve been told that for where we live, we are to hunker down, not flee. We want to keep LW near her hospital and don’t want her out in crowds – or worse yet, out of gas by the side of a road – so we will “ride out” the storm.

We prepare for the hurricane, a mixture of things we’ve heard, items googled under +prepare +hurricane and sheer randomness. My MIL called me from the grocery store on her cell. “I’m standing in front of applesauce, so I bought some.”

Somewhat half-heartedly, we fill up containers with water. Bottles of water for drinking, buckets of water for flushing the toilets. We do this because it’s the responsible thing to do, because it’s what they say to do, like boiling water if a woman goes into labor. MIL has spent the last 30 years in a coastal town, I’ve lived most of my life here. Every year, there’s another warning. Neither of us have actually had a hurricane hit us before. We are going through the motions.

MIL and I are different temperaments; most of the time we complement each other. Right now, she is hyper energetic. She winds up going to different stores at least 5 times. After the second time, she announces the secret gem of Hurricane Preparation – Walgreens. Everyone else is hitting the grocery stores, hardware stores. Walgreens is still pretty stocked. Except for D batteries. None of those anywhere.

The Husband gets home. He and MIL go out again, having thought of yet another little thing that might help. They come back with some odds and ends, plus a bottle of tequila and 2 bottles of red wine. And a bag of dark chocolate.

Meanwhile, I move slowly and methodically, gathering up containers, making a note of things we need to move inside. I am frequently on the computer, reading projected maps, detailed analyses. I charge up everything I can.

That night, we have a good dinner. We keep the news on constantly. We watch waves lick the coast, but it still doesn’t seem dire. Outside, we have a few clouds, but no rain, little wind.

Later in the evening, we go outside to see what it feels like. We spot neighbors down the street, congregating on a lawn. They have out lawn chairs and drinks. We go down, all of us. We chat, we catch up. I guess it’s a Hurricane party. I announce the Hurricane Ike drinking game to them. They all love my line about slugging your partner.

It’s all kind of surreal. We know that a hurricane is coming, because that’s what we’ve been told, but there is no hint of it at our homes.

The bugs are chewing on us, so we head back home. I turn the a/c down extra cold so that if the electricity goes off, we’re starting at colder rather than normal. We watch the tv. We see the flooding in the streets of Galveston, and think of our friends, and the little church there.

The wind is up now. There are tall, giant windows in our living room and we watch the pine trees bend. We are beginning to feel apprehensive.

We put the children to sleep in our bathroom and go back to watching the news. They show satellite pictures of a storm that seems to fill the entire gulf. We know we will be affected, we don’t know how much. “If it leans just a little bit to the east, we will be in better shape,” announces The Husband. We have all learned that to be on the west side of the hurricane is better. We are becoming meteorologists by the minute.

We watch the newscasters. They have gone too long without sleep and are punchy. We mock them, but listen to their every word as if they can tell us what will happen to our house before it does. Suddenly, everything goes out, tv, lights, the hum of the ac.

We sit on the couch. It’s so dark outside, we can’t see much of the wind and rain, but we begin seeing flashes of light. “Lightning?” No. It’s all the transformers blowing out. One, two, three … we can’t count them all. Over and over.

The wind is louder now. We decide we should move into the master bedroom. The Husband has already moved a mattress into our room for MIL. The children are asleep, oblivious to the storm. We turn the radio on to listen to the reports. The Husband, whom I’ve always joked could sleep through a hurricane, does just that. MIL and I doze, never quite sleeping.

At 4 am, it’s darker than I knew dark could be. The saying about not seeing a hand in front of your face is apt. Open eyes, closed eyes, it makes not difference. The wind no longer howls, it screams. Things rattle; I don’t know what. There is a large crash. There is a strange sound, like someone rattling ice in a glass. I lie there, wondering. Has a window broken and I’m hearing a miniblind slamming back and forth? There’s no hail in hurricanes, I know that much. What I find out later is that the rain is literally coming in sideways, pounding on the windows as it pounded on the ground earlier.

I am scared. There are no words to describe what the sound of a hurricane is like. I keep listening for that sound of a speeding train that they always say heralds a tornado. I think I hear it half a dozen times, but then it changes. The wind is coming from all directions and it sounds as if the house might just be ripped from its foundation.

A bit of the dawn is coming through. It is still dark, very dark, but it is not the smothering darkness of earlier. The winds still howl, but they seem slightly less scary. I become aware that MIL is also awake. The children and The Husband still sleep.

I fumble for a flashlight and MIL and I timidly leave the relative safety of the bedroom, not knowing what we’ll find. Has a tree crashed through the roof? Have any windows broken?

I go over to the window and shine the light outside. The storm is still raging, but my flashlight finds a broken tree, just a few feet from the window. The railing of the deck is broken. But the windows there are whole. I back away. The storm isn’t over yet.

We are afraid to venture upstairs, but we look around the downstairs. There don’t seem to be any broken windows. I shine my light out the window on the front door, but it just reflects back to me. It can’t pierce the dark.

We sit on the couch and watch the light slowly come up outside, even as the winds still bend the trees back and forth and the rain pounds down. The Husband is up by now. He checks upstairs, and reports no damage. We are cautiously thrilled. The radio says we have 4 more hours of this. As we get other “bands,” it could get worse. But it sounds like the eye just missed us. Just by a difference of a few miles. We were on the left side of the hurricane, which is the right side to be on.

Eventually, the winds die down. The rain slows to a drizzle. We discover our back fence is completely down, our yard covered in big branches. But we are grateful. We are alive and our house still stands.

The Rest of Saturday

We are careful to not open the big freezer at all. When we go into the refrigerator or little freezer, we are quick and deliberate. At lunch, I stand in front of the closed fridge and catalog everything we want. Sandwich meat, cheese, condiments, milk. I take a big breath and dive inside, grabbing and snatching. I slam the doors closed.

Some of our neighbors go out in the rain and begin clearing their yards, using chainsaws to saw large limbs into manageable pieces. They rake up the smaller twigs and all the gallons of pine needles that have fallen.

We are tired. The children play quietly and the adults dose off every now and then. At nine o’clock, it is dark outside. The heat and humidity is oppressive. Even though we have hot water, I take a cold shower in the dark, then stretch out naked on our bed and fall asleep.

Recovering from the Hurricane

We're okay. We're in the hospital.

Wait. That sounds like when my mother said, ""LE was in a car accident. You don't have to do anything. I have it all under control. She's at the Klein Funeral Home."

So, answering questions I've received:

1) Everyone in my family is fine.
2) As far as we can tell, our house is fine. Back fence blown down, some damage to our deck where it was attacked in a fit of dying rage by a tree.
3) We still don't have electricity at my house.
4) My kids are, amazingly enough, neither wrecking the house nor killing each other. We got a cool front, so they're running and playing and reading books. Oh, they did spend the first day "pretending" to play Wii, but they got past that.
5) It was very scary.
6) I still think not evacuating was the right thing to do, based on our circumstances and where we live. But after going through that (see 5) I would definitely evacuate for a Cat. 3.

We are in the hospital for LE's 4 day chemo, delayed a week due to the Hurricane. Not something I figured on when I wrote up the schedule, but I always wrote the schedule in pencil anyway. She and I are enjoying electricity, wifi, tv, air-conditioning, and ice. ICE! Until you've gone nearly a week without it, you can't imagine how much ice is a part of your life. For once, we felt like the lucky ones, leaving the rest at home.

I wrote some of the experience as it was going on. I'll be posting that later.

Thanks for caring, guys.

Friday, September 12, 2008

Hurricane Block Party

We live in an area that could be affected by the Hurricane. We are far enough away to feel fairly safe hunkering down, but close enough to fill every vessel with water and make plans to be in a room without windows. For Hurricane Rita, we fled, enduring a 19 hour trip of what would normally be maybe 4 hours. This time, we have the counter-balancing risk of having Little Warrior out in crowds or being stuck by the side of a road. So, we stayed home. We watch our giant trees sway ...

Right now, there is no rain, just wind. Nothing big yet. We went outside to see what it was like, to discover that most of our neighbors had converged on one front lawn with chairs and chatting. Amazing the things that cause us to gather in community.

In chatting, we discovered that two of our neighbors are cancer survivors. (We had our bald Little Warrior with us, so the subject came up ...) One, who we knew was fighting The Beast, has been off-treatment for a couple of months. Another, 10 years. We introduced both to LW. I think it's good for her to see grown up survivors.

The BFF-DRE emailed me a drinking game that we keep adding to. Potential calamities do bring out our twisted humor, don't they?

rule #1: Swig every time someone says/writes "Houston, We have a problem"
rule #2: Eat a nut (or other salty snack) every time someone says something about "Why haven't they evacuated?"
rule #3: Sip every time someone says "Monster"
rule #4: Swig every time someone says "We DON'T like Ike"
rule #5: (mine) Chug every time someone makes a reference to Ike or Tina Turner. Then slug your spouse/partner.*
rule #6 anytime someone says "hunker down" = eat a hunk of chocolate.

We still have electricity, but I don't know for how long. So I'll just say take care, shine on, and if you live somewhere else, have a good night's sleep.

*I'll go back to being sensitive and politically correct after the Hurricane.

Wednesday, September 10, 2008

If you want to feel better about the world,

Just read this.

I'm a big fan of Pioneer Woman. The way she writes about things like this is one reason why.

Tuesday, September 09, 2008

Bald Babycakes

Being in CancerLand, I've become friends with many other cancer parents. Even though I'm immersed in the world, it's still shocking to me to see the difference in their BC child (before cancer) and OT child (on treatment).

Unlike real life, I usually see these backwards. I see the child while on treatment, then at some point, I get to see a picture of them before diagnosis.

Every time, it's a shock. They're sooo different. Bald, no eyebrows or eyelashes ... then you see the older picture and they look so ... normal.

Well, now I'm living it. Last time, LW was a baby, so she didn't have much hair to lose -- and since she was on a 50% dose, she didn't lose much, anyway. Never lost her eyebrows nor eyelashes, either.

This time ... wow. What a difference. Living it, what is shocking is when I look back. That picture at the top, it was from Easter. Really, did she look like that? This other one, I took the other day.

Not even 6 months.

Go ahead and flip back and forth between the two pictures. I did.

It's interesting how much our individuality comes out in our eyebrows, lashes, and hair. If you get a bunch of cancer kids together, many of them look like siblings.

I guess it's kind of like the "all Asians look alike." We've all got lazy eyes. We go around noticing all the prominent stuff, so when that's the same, whether it's all black hair, or all no hair, our eyes aren't as attuned to picking up the more subtle things. Unless you're actually living in black hair land or no hair land.

I haven't taken home someone else's cancer kid by mistake. Yet.

Saturday, September 06, 2008

A cool breeze

Sometimes, something comes along from the universe right when you really need it.

Along with all the heartache, we've reached that time of the year I refer to as I JUST CAN'T TAKE IT ANYMORE ... referencing the humidity, extreme heat, and mosquitos.

I assume that it bears some similarity to living way North and having a long winter where you just can't take being cooped up inside anymore. Down where I live, most people go from air-conditioned house, to air-conditioned car, to air-conditioned work, mall, entertainment. You get to the end of the summer and you don't even want to go outside to get into the car. Too much energy. Too much gas. No one wants to bug-spray themselves just to walk 8 yards to the car, but then you get in the car and find 5 bug bites and hear an annoying buzzing by your ear. Better to just zone out in front of the tv or computer.

Today, I went outside and the expected blast of heat didn't happen. It was ... temperate. The humidity had lifted. The skeeters seemed to be sleeping.

It was 82 degrees, with a slight breeze. Not fall, but it held the promise, that really, truly, autumn will come.

"Kids, kids," I yelled excitedly, running inside. "Get on your clothes! Put on your shoes!"

"Where are we going?" called The Princess, echoed by her brother.

"We're going ..." I paused for dramatic effect, "OUTSIDE."

They tumbled down the stairs, looking at me suspiciously. Had Mom lost her mind? Were they being punished for something?

"Really!" I assured them. "It's wonderful outside! It almost feels like fall!"

Shoes, tshirts and shorts, (hat for LW) and they came out. For a couple of hushed minutes, they just roamed around the yard, pulling the swings down (put up in case of hurricane), discovering a large spider web, become reacquainted with their own backyard.

This was followed by a raucous game of I-don't-know-what, yet another complicated game with a million rules, designed by The Boy. I started to see hints of frustration in the girls' faces, so I stepped in and introduced them to Octopus Tag, followed by Father May I and other fun.

It'll start heating up again. But I got a breath of fresh air. It will sustain me.

Friday, September 05, 2008

Oh ... okay (sigh)

Well, I watched Stand Up 2 Cancer. And unlike what I said below ... we donated.

What can I say ... when it comes to cancer, I'm addicted to hope.

Big C day

Well, you guys know by now that it's a roller coaster for me, and some days, the big C hits harder than others.

This is one of those days.

Yesterday, I got a call from the clinic. Little Warrior's counts had come back and she needed a blood transfusion, which we did today. It's nothing horrible, it's just annoying -- getting up early, driving down there, wait, wait, sticking a needle in my baby, wait, wait, type and cross, wait, wait .... wait some more, finally, the infusion, which takes 3+ hours. So The Husband had to stay home to get the other three off to school, then since he would have had to turn around and come home to get them after school, he just stayed home.

WE are lucky. Because The Husband can do some work at home. (He's a consultant, so if he doesn't work, he doesn't get paid.) I am lucky. Because I have a partner. I don't know how single cancer parents do it. I really don't.

Last night, we went to The Boy's school open house. As I was walking past a hallway, I saw something out of the corner of my eye and did a double take. I went streaking back, The Husband behind me, wondering if I'd lost my mind.

There's a cancer dad whom I know through email and through this blog. I've seen pictures of his son.

There was a giant framed picture of his beautiful son up on the wall. He and my son went to the same school.

Kick in the stomach. Cancer world and regular world collide.

As I was in the infusion room today, I checked email. There was a notice that the website for one of our Wilms' friends had been updated.

I didn't check it. I knew what it would say. I had to wait til I was safe at home.

A beautiful teenager has left this world. Spunky, courageous, funny, and beautiful. She walked with her friends across the graduation stage last spring. (She didn't have the credits, but some schools are kind.) She went to Prom. In August, she watched her friends go off to college, knowing she never would.

Tonight is Stand Up 2 Cancer. We'll watch it, because I've heard that one of our Wilms' kids will be on. I won't be donating to them, because I haven't received confirmation that any will go to childhood cancer research. (And I have heard, not officially, that it won't, because they want to put it towards "high impact" projects.) Not that they're not a good organization, and not that adult cancer doesn't need the research. But I think I can be forgiven if I selfishly send a donation to Curesearch, instead.

So ... some days, the Big C fades into the background. It never disappears, but sometimes, it's just part of the wallpaper.

Some days, it's front, center, and leading our parade.

But we're lucky. Because we're still in the parade.


Lemonade and Haircuts

Thursday, September 04, 2008


Anyone know of a fabulous UU sermon that touches on "responsibility"? One that would be good for being pulpiteered by a lay person?

Tuesday, September 02, 2008

Goodbye, Danny

Oh, MAN.

The Husband and I lived for many years in Austin, TX. Living there, we got to know the "mayor of South Austin," Danny Roy Young.

We'd go eat at his little cafe and Danny was almost always there. If you walked in, you were a friend. Many restaurant owners will walk around their business, greeting customers. Not Danny. He'd come to your table, grab a chair, turn it around and straddle it, and talk to you. Really talk to you.

He was right in the middle of the Austin music scene and seemed to know everyone. It was rare to eat at his tiny cafe and not see a musician there.

He always seemed happy. He ran his cafe, and played washboard in a band and just really seemed to love life. He'd drive all the way to Dublin, TX, to buy real Dr. Pepper syrup for his Dr. Peppers and ... really ... Dr. Pepper milkshakes. (They were delicious ... and oh, the cornmeal-crusted fried yellow squash ...)

Damn, Danny. It was too soon. Last time we saw you, on a visit, you gushed over all our kids and walked us out to our car. Because that was the kind of thing you did. With all your friends.

Which is to say, everyone.

Best friends

"Mom, there's a new girl in my class!" Bo Peep tells me, excitedly. "I think she might be from another country, but I'm not sure. And she sits at my table."

"Cool," I say. "She might wind up being your best friend and you don't know it yet."

"Mo-mmm," she practically rolls her eyes, "she already is."

"What's her name?"

She wrinkles her forehead. "I don't know."

"Does she like what you like?"

"I don't know. We didn't really get to talk."

"Hmm," I say, curious. "So how do you know she's your best friend?"

"I just DO! And after lunch, when we were standing in line, she asked me what my name was."

Sometimes, I really miss being 6.

Monday, September 01, 2008

Amy Goodman arrested at RNC


Parenting and Sarah Palin

I planned on writing a post today in defense of Sarah Palin.

Not defending her policy beliefs, many of which I strongly disagree with. But her decision to accept the vice-presidential nomination, even with having a special-needs infant.

I am curious about how her family is dealing with having a child with Trisomy 21, and whether they are pursuing different therapies. Witnessing this experience with someone close to me, she and her husband immediately threw themselves into getting every bit of information as possible, and altering their lives to give their son every possible advantage in dealing with this.

I will admit that my first instinct was "What kind of a parent is she ..." to take attention away from her son and put it on running for office.

But ... c'mon. This isn't a case of turning down a promotion to vice-president of Company and Co. This is vice-president of the United States, what truly might be a once-in-a-lifetime opportunity.

So ... I was prepared to defend her willingness to accept the nomination.

But this, now, with her 17 year old daughter pregnant ... well, for me, that's different.

Part of our instinct, with our children, is to protect them from pain. Some times, that makes us make poor decisions. The parents who encourage their children to "stay in the closet," for fear of the discrimination they'll face, as one example.

But to accept the vice-presidential nomination, knowing that your teenage daughter is pregnant, knowing that the story will come out, and she will be front-and-center, not in her home state of Alaska, but across the entire United States, and so, the world ...

A little after hearing about Palin's announcement about her daughter, we watched the documentary, For the Bible Tells Me So, that profiles families dealing with their children's homosexuality.

One of the families is that of Dick Gephardt. Before launching his 2004 presidential campaign, he talked to her adult, lesbian daughter, Chrissy. He knew that his campaign would cause her and her sexuality to be put in the spotlight. He knew she would be a lightning rod for criticism and hate. He told her that if she didn't want him to run, he wouldn't.

That is what a loving parent, who puts their children before their own ambition, does.

Career and family ... it's always something to weigh. It's often not easy. I struggle with it. At this point, I'm planning on going back to school in the evenings, next January, assuming LW's scans are clear. She will be without me for a few hours each week. I think that's an acceptable price for the return.

But to put your child, your 17 year old child, in a position where they will be in the headlines for a mistake they made (and yes, I think getting pregnant at 17 is a mistake) ... I think it's cruel.

Not the kind of thing a loving parent should do.