Friday, October 31, 2008

And we want it.

Happy Halloween. Cancer is over.*


Thursday, October 30, 2008

This morning, a woman with a gentle face popped her head around our door and asked if I was LW's mom. When I said yes, she said that she has a daughter just LW's age and they just got here.

Really just got here. Her daughter gets a biopsy today. It sounds like Wilms' Tumor, bilateral, like LW's was at first diagnosis.

This mom is holding it together -- not like me, I was just a puddle when we first came. But I recognized her eyes, because there were my eyes back then. They are filled with fear. They show that her head is swimming, she is overwhelmed.

We met up in the playroom and as our girls played, we talked. I gave her bits and pieces of information. I know she'll remember little of it, but she gave me her email address. I told her about setting up a caringbridge site, I told her that the McDonald's here is open til 3 am.

And I told her, "You will get through this."

She works at the post office, she doesn't know if she'll need to quit her job. They don't live in the city, they're in a small town near here.

She is at the beginning. You know how on tv, or in movies, something happens and a person goes hurtling back in time? That's actually what it feels like. Huh. Sitting there, it was as if a big whoosh swept me back to that first of many hospital rooms. I didn't even know we were on the oncology floor. The Husband knew and was furious. She hadn't even been formally diagnosed.

How innocent, how raw we were.

I was glad that I was here to talk to this mother. Glad we exchanged info so I can "mentor" her through this world. I wanted to say, "This world, it's not as bad as you think." In some ways, that's true. Going to clinic, even coming to the hospital, becomes normal. And in other ways, it is far, far worse than she yet knows.

I was thinking about initial diagnosis versus relapse-diagnosis the other day. Initial diagnosis is a more dramatic change. In 24 hours, not only does your life change, YOU change. You are now a cancer parent. And your child changes. She's still your funny baby, but she is also now a cancer kid. You can run, you can hide, but you can't escape. You will never be the same. Your innocence is ripped away.

In some ways, though, relapse diagnosis was more painful. Initial diagnosis was heartrending, but there was a certain level of protection provided by shock and provided by ignorance.

Relapse diagnosis was the most excruciating pain I've ever experienced. Because there was absolutely no numbness. No swirling cloud of being overwhelmed. This time, I knew. I knew what it meant, I knew the world. I remember sitting on the cold floor of the hospital bathroom, holding two towels up to my face and screaming into them.

I didn't know how I was going to survive the night.

But the morning came. Joy did not come on that morning, but somehow, when the sun rose, it gave me the ability to deal with it all. I dried my eyes, did my research, listened to doctors, made some calls.

And now ... the grainy edges of the past recede and I am back here, in our hospital room. LW is taking a nap, dressed in her pumpkin costume. Tonight, she'll get her last chemo treatment.

Her Last Chemo Treatment. Oh, God, please God please God. Please, may this really, truly be the last.

Tomorrow, we'll finish flushing the liquids, get the neulasta shot and go home, hopefully in time to go trick or treating.

It breaks my heart that as we leave, another will take our place.

Wednesday, October 29, 2008

Halloween in a Children's Hospital

... is not bad.

Little Warrior's counts were good and a room was available, so we checked in yesterday. We should be able to leave at 4 on Friday, which means we'll get home for trick or treating, which doesn't start in our neighborhood til it gets dark.

We have tons of costumes at home, the result of having four children and me going through a garage sale-ing phase when the first was a baby and buying up every costume I saw that was $3 or cheaper.

Financial tip: tons and tons of costumes fit into that category. Come spring, people just want to get rid of costumes. Even the homemade ones.

I'm pretty sure that the one she is wearing today was lovingly homemade. Not by me, of course. (Shudders.)

Back to my point ... we have lots of costumes, so I told LW she could bring 3 costumes to the hospital. Today is clown day, and you'd better believe that we attract boatloads and oohs and aahs. And by "we," I mean, "she," which is just fine with "me." Invisibility is a good look for me these days.

Anyway, first we went up to the hospital library. A school evidently had a pumpkin decorating contest, where they decorated craft pumpkins like book characters. Everyone who goes in the library is urged to pick one out. LW chose one decorated like Knuffle Bunny. Then we got back to our room and discovered LW's favorite Child Life specialist had left one decorated like A Bad Case of Stripes.

Lunchtime. I grabbed a sandwich out of our mini-fridge and LW and I went down to the Ronald McDonald family room to heat it up. Hey, we're just in time for a party! Some cute high-school girls were there, in costume, with treat buckets, sandwiches and face painting. They painted up LW and oohed and ahhed over her. I tried not to get too misty. I'm always touched at people -- complete strangers -- coming over just to brighten up a sick kid's day. Plus, this being LW's last round of chemo, I'm just very sentimental. Oy.

After eating lunch and playing in the playroom, we're back in our room. LW has an interesting way of letting me know it's nap time. And by "interesting," I mean "exasperating." She gets really really naughty and really really obstinate. I swear, you can actually see the horns pop out of her head. Which is an interesting look with a clown outfit. Now I'm really going to have nightmares about clowns eating me.

She's settling down and some nice ladies from an Optimists club come by with a little pillow for LW. People love to give cancer kids pillows and blankets. I think we have enough to furnish a couple of bedrooms. No disrespect intended.

But while I'm teetering on the edge of ungratefulness, let me mention that if you're making up treat buckets or bags for kids, make sure there's some toddler-safe candy in there. LW got a bucket full of gumballs, double bubble, jawbreakers and Now-and-Laters.

Hmm. I was a much nicer person when I began this post. Maybe I need a nap, too.

Monday, October 27, 2008

The Last Night Before

I can't sleep.

This isn't unusual, and when it is the night before going into the hospital, it's a given. But tonight, rather than being awake because of sadness that we're going in, or stress that I haven't packed the right things or worry that I'm forgetting something that needs to be taken care of here at home ... rather than any of that kind of wakefulness, it is a different sort.

Excitement. Happy excitement.

Tomorrow is Little Warrior's last scheduled chemo hospitalization.

(Didja notice how I put in that word "scheduled" as kind of a mitigating sort of thing, so that I wouldn't have to go through the whole list of my superstitious ramblings, in fear of setting off some kind of bad luck? Ah what the hell ...)


Now, there are certainly things that could change this, like if her counts suddenly nosedived, or they don't have a room, or ... well, that last "or" is one we don't want to think about, isn't it?

But hopefully, all will be well. Her counts will be up, a room will be available ...

And cancer will be over.

Little Warrior has been talking about this, nearly since we started. "On Halloween, cancer will be over."

If all goes well, we'll get out of the hospital on Friday. Halloween.

This week, my dad looked at her, running around like your average jet-propelled 3 year old and said, "You know, maybe we should just believe her. On Halloween, cancer will be over."

I have had the occasion recently of worrying about the baby of one of my blogfriends. Her situation is different from mine; I can offer no wisdom, no tips, only, "I am thinking of you."

So you see, I've had a taste of what you have had. For six months now, you have cared. And 2 years before that.

Thank you. I know how your heart can hurt for someone you've never actually met.

I know that even in the absolute best case scenario, nothing will be clean cut. I will not come home, unpack the bags I've been hauling for 6 months, have a good shake, and get back to normal life.

There are things to be processed. Questions to be answered. Little Warrior's immune system won't be up to snuff for about a month. I know it will take my emotional immunity longer to regain its strength.

LW has scans the week before Thanksgiving. Her first "off-treatment" scans. And if those are clear, then every 3 months.

But now, tonight, I am allowing myself to be hopeful.

Still and all, though ... I really need to get to sleep.

Sunday, October 26, 2008

The Boy and Barack Obama

I mentioned, below, that The Boy is gaga over Obama. Let me expand on that.

I guess it was about last February that he saw a speech of Obama. He was entranced. Here, he was watching someone who talked about things that he believed in. Someone who acted as if people can do great things together.

He began reading everything he could get his hands on about Obama, watching the political shows, and asking every adult their opinions.

He has so been lit on fire that he has decided that when he grows up, he wants to be president. Perhaps that's not that unusual. Except that at 12, he has decided that he is going to go to a good college, get a degree in Accounting, go to law school, be a lawyer for several years, then go into politics. He has seriously discussed with me whether having a UU minister for a mother will make his run for the presidency difficult.

After watching some of the things both candidates have had to deal with, he's decided that the easiest thing is for him to just live a life on the straight and narrow. No drugs, no sex shenanigans.

This is the effect Sen. Barack Obama has had on my son.

Will this last? Heck if I know. At 12, I wanted to be a country singer. But it's fun to watch. And what a concept -- a politician as hero to a 12 year old boy!

And he's already started on his plan. He competes in his first debate tournament next month.

Saturday, October 25, 2008

The mark of a great DRE

The BFF-DRE is in Albuquerque, along with a gaggle of other Unitarian Universalist Directors of Religious Education. She went to Barack Obama's rally. She called me.

Well, of course. I'm her best friend, right?

She immediately ... asked if The Boy (12) were still awake. I handed him the phone. She held her phone up for the duration of the speech, so that he could hear it, "live."

He is ecstatic. After the speech, he literally danced around the room.

And that, my friends, is the mark of a great DRE.

Edit: To clarify, The BFF-DRE was not attempting to influence the next generation's political beliefs. The Boy is super gaga over Obama, so much so that ... wait, that'll be a whole post in itself.

Friday, October 24, 2008

Yes Day

My father called me a few days ago and announced that he and my mom needed to have a "Yes Day" with Little Warrior. So yesterday morning, hat on head, carrying a little backpack and a big tote bag, she was delivered to their home away from home during All of This, their RV.

I started "Yes Day" at my house a few weeks ago. LW hears "No" so much. No, you can't go to the store. No, you can't play with other kids. No, no, no. Take this yucky medicine. Stick out your finger to get it pricked.

So on one day where she didn't have any meds scheduled and no visits to the doctor, I said, "Today is Yes Day. Unless there's a really, really, really, good reason, I will say Yes to whatever you ask for."

We read a lot of books that day. Hard to complain.

A few days later, she spent part of the day with her grandparents. "It was Yes Day with Bubbe and Pops," she informed me later. "Is every day with them 'Yes Day'?" I asked her. She grinned and nodded.

My parents loved that. My strict, non-indulgent parents ... well, they disappeared a few years ago, to be replaced with these two marshmallows bobbing in a sea of warm grandparently chocolately goodness.

So, yesterday, she had a day of Nuttin' But Love. My dad even went to McDonald's, an unfamiliar territory, and bought her a cheeseburger for lunch. Unfortunately, he's not down with the world of Happy Meals, and in his effort to get the smallest burger, he got her a homestyle burger, which was unfamiliar, and remained uneaten. (But OMG, what a great story, hearing about my clueless dad asking for guidance from the oblivious counter guy.)

Cheeseburgers and jelly sandwiches and playing "store" with Bubbe's pocket change and then climbing into their bed for a long, long nap. For some reason, the kid that never wants to sleep at home absolutely loves sleeping in their trailer.

Everyone deserves a Yes Day.

Wednesday, October 22, 2008

Shake shake shake, Senora


(The sound of Lizard Eater shaking it off.)

Cancer has stolen enough from me and my family. It's *&!! not going to steal our Halloweentime.

Happy Samhain and a Happy Haunting to Ye. I'm off to make my list ... spiderwebs, silly string, candy ...

Tuesday, October 21, 2008

Trusting the Universe

A friend and I were talking about the end of LW's treatment. I explained that I was more nervous about being off-treatment than on. Once chemo ends, what's going to happen? She said, "oh, so you're just going to have to trust the universe."


No, no. I explained that I don't trust the universe. I mean, it's not any kind of antagonism, it's just a neutral thing. How can I "trust the universe" when I have so many friends who are in excruciating pain because their child has died? Um, sorry, but trust in one hand, spit in the other, see which fills up faster ...

It's the same as those with great faith in a sentient God who say, "Trust in God," "Trust in Jesus," etc. I just cock my head at that ... I don't understand. Many children die every day. God doesn't keep that from happening.

I'm sure they'd say something then like, "If that happens, it's because God (or the universe) has a plan."

And at that point, I try not to roll my eyes.

I don't trust in the universe; I don't really understand the concept. Along with "everything happens for a reason," and "cancer parents are special," that idea left me the day we were told, "Your daughter has a tumor." The first time.

Glad for those who draw comfort from the idea that it does, but for me, um, no. Especially not today, when I find out that in another one of our Wilms' families, a family whose child really has been a miracle -- and I don't say that generically, this is a child who was not expected to make it through one night and he survived that, but is still fighting cancer -- in this family, a family of tremendous faith, Mom just was diagnosed with her own, very serious, cancer.

I have another friend whose child is fighting cancer at the same time my friend's father is fighting cancer. Talk about the sandwich generation.

So, no, when LW goes off chemo, I won't just calmly trust the universe.

I will do as I did last time ... try to live fully between the scans that will come every three months. If I'm lucky, and capable, I'll do okay for most of the time, just losing my mind during the week before each scan.

And if I'm very lucky, that scan will show that I get to do the same for 3 more months. Until the next scan.

Monday, October 20, 2008

No Comment

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?"

Wednesday, October 15, 2008

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 ...

Tuesday, October 14, 2008

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.

Monday, October 13, 2008

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

Saturday, October 11, 2008

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.

Wednesday, October 08, 2008

Who Wants Something Fun?

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

Tuesday, October 07, 2008

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.

Monday, October 06, 2008

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.

Saturday, October 04, 2008

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.

Thursday, October 02, 2008

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.