Friday, May 30, 2008

Reality Bytes

So, yes, we are in the hospital. Counts were good, so here we are. She got her first chemo last night at 8 pm, after being flushed with fluids for about 6 hours. Etoposide went fine both yesterday and today; no reactions. Have been kept hopping at all hours to get LW on the potty each time she hollers, but no accidents. As Rev. Christine said, better lots of peeing than vomiting. LW could have both, but so far so good. No nausea. Some leg pain, and other than a brief "high" on one of the drugs last night that gave her the munchies, not much of an appetite.

But she's strong and her humor is good. We've enjoyed playing together. We talk long walks around the pediatric oncology floor. Everyone she comes across, patient, doctor, nurse, or family member, she asks, "And what's your name?" They smile, and tell her. "Oh!" she says. They ask hers and she tells them, carefully enunciating each syllable. I am proud this friendly sprite is mine.

And ... her hair is falling out.

If you haven't gone through this, you might be saying, "So??? It's just hair!" Even if you have gone through this, you might say that. I know, because first time around, I did. And when new cancer parents worried about the hair loss, I privately thought, "So??? ... C'mon, get your priorities straight!"

Which just goes to show you that you can't know how you're going to respond to something til you're actually there. Because this is kinda ripping a new hole in my heart.

"It isn't about the hair," guessed the DRE-BFF when we talked. Yup. Too true.

It's not about the hair, per se. It's about becoming, visibly, a Cancer Kid. Because we have a cultural identity we give to these small bald circus freaks (to quote House). Strong, brave, quiet ... and acceptable to die.

I mean, no, we'd never consciously say it's okay. But we can accept it in a way. Because it's horrible, it's unfair, but sometimes it happens ... to those children so foreign from our own.

I'm not tossing rocks here. I do it, too. We just have a different feeling about kids that look like this. The bald head is a warning sign. Danger ahead. Heartbreak. And so we see the picture of the hairless, eyebrow-less child, and we hear that they died. It's sad, but not shocking.

But then ... you see a picture of them before diagnosis. And even for me, someone who has now seen so many ... it's a punch in the gut. It's so shocking. They were a normal child! I mean, I know intellectually that they weren't born skinny and bald, but still, it's a shock. They were normal. They looked like any kid. My kid.

And now my kid ... is going to look like a cancer kid. Her hair isn't falling out in chunks, it's more like shedding. I run my fingers through her hair, as I do all my kids, and fine strands stick to my hands, coming away from her. Eating dinner, she makes a sour face and spits. Hair in her mouth.

And I really, really don't want to face it, but because I don't have the benefit of shock and ignorance, I've been living in this world for more than 2 years now, when my sunny self says, Yes, but it will grow back, my shadow self says, Will it? Will it have the opportunity to grow back? Will she end chemo and be fine, No Evidence of Disease, long enough for her hair to return?

It's just hair. I thought.

Fear of the Black Man

First off, we're in the hospital as scheduled, we're fine. More on that later.

But now ...

MassMarrier pointed to Geraldine Ferraro's latest column. He mocked her as damaging herself and I certainly hope he's right.

For me, her column made my blood run cold.

It's too, too, too familiar. Her words seem carefully chosen to stroke a hidden chord inside white Americans, the chord that says it's normal and understandable to fear the black man. He's coming to take your job, rape your woman, and hurt you. It's acceptable for officers to kill an unarmed black man. Because of the fear, you see.

And Barack Obama? Well, he's coming to change the country. All of you with white skin, you're off the island! From her column:

They see Obama's playing the race card throughout the campaign and no one calling him for it as frightening ... they're upset because they don't expect to be treated fairly because they're white ... they believe he is telling them that their time has passed.
Nowhere in her column does she give examples of how Obama has "played the race card."

Perhaps it is because of his having brown skin. Flaunting it.

There is a wonderful book, someone help me with the title -- I'm in the hospital without my library and having a chemo-parent moment -- full of essays about being a UU person of color. Anyway, there's a fabulous one by Rev. Rosemary Bray McNatt about the fear she has of white fear ... of someone she loves not coming home, simply because he was wearing black skin at the wrong time.

I understand that Hillary Clinton's impending nomination loss must be frustrating to Geraldine Ferraro. She probably feels that it's been way too long since she was the vice-president nominee for another woman to be on the ticket. I agree with her.

And there are some genuine race vs. sexism issues through history. I think of Olympia Browne, out on the lecture circuit, speaking of both black and female suffrage, while the black speakers, such as Frederick Douglass, spoke only of black men getting the right to vote.

But this isn't a simple case of female vs. black. These are two different, complex individuals with two different promises for America. To reduce it to sexism vs. racism is facile and makes the writer look shallow.

We're supposed to be better. Rising tide and all that.

For Geraldine Ferraro to try to tap into white fear is beyond disappointing to me. It hurts.

Tuesday, May 27, 2008

Just an update ...

... LW's fever never got above 100 and has been normal all day. I was able to go out today by myself and get some little posters laminated for her hospital room (ayiyiyi, ask the price first!) and do some grocery shopping.

If all goes well, then we'll go in Thursday for counts and office visit (meaning: meet with doctor, which we don't always do), then if counts are good, we'll be admitted to the hospital for about 6 days.

To say I'm apprehensive would be a laughable understatement. Even after talking to others who have done "Regimen I," I just don't know what it's going to be like for us. I know that when they give her Etoposide, they'll page all the doctors on the floor to let them know, and they'll have a crash cart in her room, in case she has a reaction. I know that because the cyclophosfamide is "hard on kidneys," they'll be flushing her with copious amounts of IV fluid, before, during, and after chemo. And by copious, it has been explained to me that this means flooding the diaper, flooding the waterproof pad, getting up every hour and a half ...

So ... I just don't know.

But with all that ... I am crossing fingers, toes and eyes that her counts will be fine and we can get a room and get this started already.

Bags are (mostly) packed. Still need the electric plug for my thermo electric cooler. (Mom doesn't get a food tray.) Picked up Geraldine Brook's March from the library. Ginormous bag of videos. Nuther bag of toys.

Ready ...

Monday, May 26, 2008

Yesterday was a really good day

Lazing around, then the DRE-BFF came and babysat so that all the other grownups could go out to dinner. That was so refreshing, being somewhere with no kids to worry about, cut up food for, etc. Had some kind of super duper frozen layered high octane cocktail that reminded me of popsicles.

Came home and all of us -- including the DRE-BFF -- had karaoke night. Whoo-hoo!

It was a nice vacation ... today, though, LW has a fever, bouncing between 99 and 100. If it goes to 101, we have to go the ER.

Sunday, May 25, 2008

The Last Chapter of the Book

Last night, I stopped treading water. Rather than sinking down slowly and gracefully, I flipped over with a loud splash and dove for the deep.

I read the last chapter.

It was time. I needed to. After everyone had gone to bed, I sat up against my pillow, The Husband snoozing next to me, LW asleep in her inflatable bed by ours, and read the chapter on Death and Bereavement.

February 2006, as we were going through this the first time, the good people at Candlelighters sent the book to us. It is exhaustive and frank and has been very helpful. But I never read the last chapter. Not while she was on treatment. Not while she was in remission.

Not when we were told it was back.

It was time. I have been treading, treading, afraid of what lay beneath the waters. It was time to dive deep.

It was not peaceful. It was not reassuring. My eyes are so puffy from crying last night, it would take a field of cucumbers to repair the damage. I went to sleep mouth-breathing, my nose completely stopped-up.

But it was necessary. And now, perhaps, I can move forward and do what needs to be done, not afraid of slipping beneath the waves.

Saturday, May 24, 2008


I wanted to sit down and write a beautiful post about a beautiful birthday, but I'm cranky, due to a cranky chemo-filled toddler who doesn't want to go to bed.


(Takes a sip of a Hpnotiq Breeze.)

Okay. It was a nice birthday. Her aunt AdventureGirl is still here, her aunt GlamourGirl flew back in for the occasion, and her grandma Mother-in-Love drove up. Of course, this isn't normal. Normal would be maybe one of them, but we are circling the wagons, because This Child Has Cancer. We don't talk about it a whole lot, not because we're avoiding anything, but because the "novelty" of this has worn off. We've already done this.

We've done this and we've not done this. This week, she and I will go in for her first in-hospital chemo. I have been working hard to try and make it as fun as it can be for Little Warrior. Got some fun posters to put up, treats and toys already packed ... we have been calling these "hospital parties." "Our hospital party is next week! Oooh, you can take your new pajamas!"

On one level it is sad and pathetic, but what do you do? We've got to do it, and we're going to have do it many times, every three weeks (depending on counts) into October. Need to at least start with a fun attitude.

Oh, I'm not going to go into all of my feelings and stress. I'll save that for tomorrow, or another day. Not today. Not on her birthday.

We have had cake today, and creamy macaroni and cheese, and fresh cherry pie. ($15 cherry pitter ... so worth it.) We've danced. And taken after-the-sun-goes-down walks. And opened presents.

We are open with each other, the adults, but there are some places we just don't go. Like wondering what life will be like on LW's 4th birthday.

As I've been writing, Little Warrior has finally settled down, relaxed, and fallen asleep, not 2 minutes after telling her father that something is wrong with her milk. Yes, something is wrong with her milk. It's traveling over a tongue messed up with chemo.

Phew, says The Husband. She is in bed.

Still. Pretty good birthday.

Friday, May 23, 2008

3 years ago

3 years ago tomorrow, I gave birth to Little Warrior.

About a month after starting seminary, the husband and I waited the requisite 5 minutes, then saw that the stick had double lines. We were pregnant again. As with the others, completely planned. We were lucky and have never taken it for granted.

Bad morning sickness, exacerbated by my seminary then being housed in a really old building, with old building smells. One whiff and ewww, I turned green. I began stopping at the Subway on the corner to pick up a sandwich to have before walking inside.

I stopped at that exact Subway this week, not to get a sandwich, but to apply LW's EMLA cream before we got to the hospital and they accessed her port (meaning: I put on numbing cream that takes 30 minutes to take effect before they jab a needle into the portacath beneath her skin.)

Huh. Stopped there both times for LW, in a way.

I've written before about the movie Two for the Road, and how, when going somewhere I've been at a different point in my life, I expect to see my younger self out of the corner of my eye.

As I bent over LW's seat and applied the thick cream, covering it with Press And Seal (great for bandaging), what would I have done if I had looked up and seen my pregnant self inside Subway, buying a turkey and lettuce sandwich? What would I have told her?


Nothing. I would have told her nothing. There would be nothing that I could say.

I would have looked at her, in her innocence, in her green glow ... just looked at her, wistful. I would have looked at her and silently wished her well, sent her good wishes in enjoying the rest of her pregnancy, enjoyed the first 6 months of her baby's life.

I have learned, oh how much I have learned. None of it has been worth it, but still, I have learned. And I have had some wonderful moments and some horrible moments. The only thing that I could tell her would be, "You will get through this." But if I told that innocent, so-much-younger me that, it would only worry her.

And it's okay. Because someone else told it to me, someone who had been there-done that, and she said it right when I could understand it.

LW is asleep on the living room floor. No nausea or hair loss yet, but she's slowing down a bit. And very cranky with Mom. It's time to put her to bed and go to bed myself. Birthday cake is made, just needs candles.

Three years ago tonight, my bag was packed, the baby seat was in the car. I knew I'd be meeting my daughter the next day. She was my 4th, so there was no fear of labor. Excitement. Anticipation.


Monday, May 19, 2008

Making beauty, finding joy

If you are averse to touching stories about saints dressed up as normal people, just click away from this page now.

Today was Little Warrior's last day of radiation. (KnockWoodPleaseGodEtc.) I will not miss getting up at 5:45 am (to leave by 6:10). I will not miss the morning traffic. I will not miss watching LW go limp as the propofol hits her and knocks her out. I will not miss my mind worrying about what the late-effects of the radiation might be.

But I'll miss the people.

In the world of pediatric oncology, more often than not, the person is pretty special. Just goes with the territory. I imagine it's the ultimate weed-out profession. Kids aren't very tolerant to unfriendly doctors and nurses. With little exception, it seems like the "best of the best" wind up working in the oncology clinic or on the cancer floor of the hospital.

But even among these best of the best, you can still be surprised as it goes another level. Like the nurses today, who brought cupcakes and gifts to celebrate LW's last radiation + 3rd birthday (next Saturday).

Two folks in particular I want to tell you about. One was our nurse, HummingbirdNurse. She's little, has bright eyes, and tons of energy. She was also an amazing teacher, and I'm not talking about her coaching me in flushing LW's port.

We were without her for one day. It came out that the reason was because it was the 7th anniversary of her husband's death, and she would be at the cemetery.

On the day she returned, I asked her if she found it peaceful. Oh yes, said she. And then we got into one of those deep conversations that just somehow happens with someone you don't really know, but would probably be friends with, if you were in different circumstances. She told me about how after he died, she couldn't sleep ... unless she went to the cemetery. There, she would have incredibly restful sleeps. She would wake with the groundskeepers gently shaking her awake. One time, she woke to find a procession driving by her, all of them gawking. We both enjoyed laughing about that.

Getting serious again -- "I knew he wasn't there," she said. "When he died, I felt him leave me. But ... it was his marker. And I felt better."

She left me with much more, including a question that is so spot-on in some situations, I know I will be using it. Especially on myself. It is: "How is your soul?"

The other is LW's anesthesiologist. He is 78 years old. He tried retirement, but came back. He works part-time, doing the anesthesia for kids who are too young and/or too wiggly to lay still for radiation.

He is gruff and grandfatherly -- not surprising, since he has both grandchildren and great-grandchildren.

Propofol comes in little glass bottles. He has, HummingbirdNurse confided, a special routine for cleaning and sterilizing the bottles, soaping and rinsing, running them in the sterilizing oven. Then he takes them home, and he and his wife glue them together with glass glue, stuff them with tinsel and colored lights, back them with green felt and voila ... a really amazing Christmas tree, that he gives to the young patients at Christmas time. "It makes a good night light, too," he muttered to me. (We wound up with one, probably aided by Hummingbird Nurse and the fact that he has a great-granddaughter just LW's age.)

Isn't that just a fabulous story? Rather than turning away from the emotional pain of working with itty bitty cancer patients, he takes the bottles their anesthesia comes in and makes something beautiful. Not that he is detached from the pain of the situation. "You see how he hurried out," grinned HummingbirdNurse, after I impetuously hugged him for the tree. And he once -- again, gruffly -- said in response to me admitting that I'm a crier (after he praised me for not being nervous around LW), "Well, these kids. Sometimes I feel like crying."

And then he hurried out of the room.

Saturday, May 17, 2008

Walnut Butter

You guys are so lovely, and so supportive ... so I'm sharing this bit of ambrosia. Joy. Whatever.

If you even remotely like walnuts, make this immediately. It's one of those things that transcends the sum of its parts. And it's super easy, assuming you have a food processor.

My friend Teacher-Girl made this and delivered it to Castle Lizard while we were in the hospital. My sister-in-law, AdventureGirl, was the first one to try it. When we came home, one of the first things she said was ... in a hushed, reverent tone ... "You have GOT to try the walnut butter."

Eh. Whatever. I mean, I like walnuts okay. But a nut butter is a nut butter, right?

And then I tried a spoonful.

I went back into the living room, where AdventureGirl was playing with Little Warrior. "OH MY GOD."

She grinned a knowing grin. The smile of a woman who knows that another woman has been introduced to ecstacy. "Incredibly good, right?"

I was without creativity in my words. All I could do was utter again ... OH MY GOD.

It's the perfect balance. It's bitter and creamy and sweet and salty.

No exact measurements. You don't need them.

Walnuts. Some brown sugar. Bit of salt. Mild vegetable oil.

Blitz the walnuts with the brown sugar and salt. Add some vegetable oil. You don't want it as "wet" as normal (natural) peanut butter. As long as you thoroughly blitz it, it'll still be spreadable.

Keep it in the fridge. There's no preservatives in this baby.

Share with someone you love. Like a fabulous friend or in-law.

Friday, May 16, 2008

Ready for this week to end

Not because of Little Warrior ... yes, it's been a week of getting up at 5:45 am every morning for a 7:30 am radiation appointment, but it's been okay. It's been offset by the fact that the people there are really amazing, loving people. Will have to write about one of them, "Hummingbird Nurse" at another time ...

But because this week has been one of just sucky, sucky news. And all from CancerWorld.

My second cousin (is that it? the wife of my mother's first cousin? Second cousin by marriage or once removed or something like that ...?)

Anyway, she's been like an aunt my whole life. Went in for gall bladder surgery, to come out with a diagnosis of Breast Cancer, Stage IV.

Effity effity efff.

And one of my good blogging friends, whom I've gotten to know during the past two years; we've even exchanged "real life" Christmas cards and addresses ... and she's gotten scary news and has to go in for surgery next week.

And one of The Husband's coworker's husband ... just diagnosed. Wants our advice in getting into Prestigious Cancer Hospital.

And Pretty Pretty Little Girl ... diagnosed a couple of months after LW (the first time). With Wilm's Tumor. A week ago, it was scary, but her father was planning on her upcoming stem cell rescue and thinking about where she'd go to school after treatment.

Today, they are planning her funeral.

In the cancer-parent world, we call it "earning her angel wings." Because we can't bear to say "died."

She earned her wings Wednesday. So fast, this time. Right before she left, she told her grandparents she loved them.

Just. Too. Much.

Turned on a music video show. Got irrationally angry at Kurt Cobain and Heath Ledger and everyone who has ever committed suicide or died because of a stupid mistake.

Including my brother.

Even though I realize ... just a few weeks ago, when we got the confirmation that the cancer had come back to LW ... perhaps for the first time, I really experienced the kind of emotional pain that made me understand why someone would end their life. It wasn't even remotely something I considered, but I understood ... how, if I felt that the pain would never abate, I could want to end my life.

This was huge. No matter how short it lasts, I believe life to be the most amazing gift. Even if the short time we have is all we have ... even if we only live one day ... just to live is an amazing, incredible gift.

But I understood that the pain can be heavier than the gift.

(Deep sigh.)

Little Warrior is doing great. No nausea, no hair loss, no fatigue. But that's because we just we've only just begun.

A kiss for luck and we're on our way ...

Thursday, May 15, 2008

"No, It's the Donut Store."

We are at Hospital 2, the Children's Cancer Clinic, having already had radiation at 7:30 am at Hospital 1.

They knock LW out for radiation, since it's pretty hard to get an almost-3 year old to hold still in a dark, loud room. Which means no eating beforehand. Accordingly, we stopped downstairs and got a chocolate donut and chocolate milk for her, coffee and bagel for me.

She has eaten all of her donut, then demanded the rest of my bagel. Whoo-hoo! Eat it up, kiddo.

We checked in, then sat down to eat. I said something about how we are "at clinic." I want her to have a frame of reference, you see. To know where we are.

"No, Mama," she corrected me, furrowing up her forehead. "THIS IS THE DONUT STORE."

Works for me.

Wednesday, May 14, 2008

God's Plan

Okay, now that I am through with my term paper, I can rant about something that happened last week. Of course, by being "through" with my term paper, I mean that it's written. I still have to go in and cover-sheet it, and turn full refs to ibids, and such.

And now the rant ...

The Boy (middle school) has a lovely school counselor who has called him in to break the ice, talked to him about what's going on with Little Warrior, and just been very helpful.

So, I asked The Princess (elementary school) if she wanted me to contact her counselor and ask for her to have a meeting. Princess said sure, she'd like that. (Bo Peep had no interest, which I knew. Talking to a stranger about her feelings would be the 4th level of hell for my shy one. Luckily, she has Greatest Kindergarten Teacher Ever.)

So, The Princess goes to see the school counselor. Public School Counselor. That's important.

At some point in their conversation, The Princess asks the counselor if she thinks Little Warrior will die. This is good, that she opened up like that, right?

Except that this is what happens:

Counselor: What religion are you?

Princess: Unitarian Universalist.

Counselor: Okay, so you're a Christian.

Princess: (doesn't say anything)

Counselor: Well, you need to just be able to allow your baby sister to live out God's plan for her.

Words. Gasp. Fail. Me.

Forget the assumption that Princess is Christian. Eh, we're used to it. But even if she were, for this Public School Counselor to pass on such egregiously Bad Theology, is ... just ... stupifying. There are plenty of Christians ... even conservative Christians ... even conservative Christian ministers ... who don't hold that particular belief.

As a theology student, a potential minister, the spiritual damage this could do just hurts me. I mean, if you're 8 years old and someone tells you that the reason why your baby sister has cancer AGAIN is because it's God's plan? And she needs to, you know, suck it up and accept it?

On the good side ... The Princess is not prone to deep theological conversations -- that's just not her thing. But (thank you, UU Church!) she knew that this was Just Not Right and came and told me about it. And when I asked what she thought about what the counselor said, she kind of rolled her eyes and said the she didn't believe that.

And she wanted to know what I thought. And I told her that I most definitely did NOT believe that God caused this. But that when we cry about it, God cries, too.

And she smiled. And nodded.

"Like-minded people"

I have this friend who makes these really killer blueberry muffins. And if you show up to our church, there’s a good chance that you’ll get one. These muffins are delicious, and you could be forgiven for admitting that the reason why you joined the church was the blueberry muffins.

But here’s the deal. The muffins are just a “perk” of membership. They shouldn’t be why you join the church, they shouldn’t be why you stay. There’s work to be done, Friend, and while you can continue to enjoy the blueberry muffins, you need to pick up a hammer and start swinging.

(Go here to understand my tangent. It’s not really about muffins.)

Sunday, May 11, 2008

video of Little Warrior

For Mothers' Day, The Husband gave me my combined birthday/M-Day present, as requested, of a Flip Video camera.

I'm hoping to keep kind of a running documentary of this, our second journey to Cancerville. To let people know what it's like. Because for me, I just had no clue. Cancer was bald kids with big ears and surely their families must be very special, for the universe to have put them in that situation.

Ha. Think that if you want, but I assure you, it gives you no protection to feel that you aren't "special enough" for cancer.

The reality of it all was surprising. It's not Lifetime movies, and heroic mothers (no, really), and brave angelic children. It's just normal kids, who get sick. It's paying $12 for parking and waiting hours for appointments. It's promising your child the moon if they'll just take their medicine. It's people surprising you with their kindness, and to be honest, occasionally surprising you with their stupidity. (Kindness vs. stupidity runs about 20:1, I'm pleased to report.) Most of all, it winds up being very, very normal.

Sad, yes. Scary, yes. But normal.

The thing that I still don't have a handle on, the thing that still surprises me, is being reminded time and again that cancer kids don't start out as cancer kids. Meaning, they're plump, they have hair, they're naughty, they're funny ... they're just normal kids. You see a picture of a bald, thin child ... and then you see the picture of them before they were diagnosed. The normal picture is jarring. Unbelievable, almost.

Anyway, I'll be posting these quickie videos on

There's one right now. You can look. It's not sad, it's funny. Land Shark! Candy Gram!

Saturday, May 10, 2008

Little Warrior is doing A-OK

We're keeping her on the Zofran (anti-nausea). So far, you really can't tell she received chemo yesterday. Eating, playing, having fun with her daddy.

"How are you feeling?" I asked her.

"I feel ...," she paused and thought, wrinkling up her brow. "I feel like Pooh." She smiled.

Sounds good to me.

Rest peacefully, Ric Masten, "Let it Be a Dance"

This just came in over the UU Worship list:

We are hanging the feathers on the wind. Dad passed peacefully late last night, May 9, 2008, at 11:50 pm, his whole family around him singing Let It Be A Dance, candlelight illuminating our love. We are thankful for all your support through this sweet time. We will post a short article on his website in a day or two.

Love, Jerri and all the Masten clan.

Prayers to all his loved ones with appreciation for all that he gave.

Friday, May 09, 2008


"Do you think she pulled some kind of a bait and switch?" GlamourGirl asked.

It's a good question. Little Warrior is running around, smiling, having fun. I, on the other hand, look as if I've been run over by a Mack truck.

Radiation: rather than access her port (put a needle in), they give her gas. When she comes out of the gas, she is screaming, kicking, hysterical. Some children just react this way, I am told. We will never use gas again, I vow.

She is completely out of control ... really, a wild beast. Slapping me, pinching me, scratching me, screaming, yelling. I manage to get her strapped in to her car seat and we leave. I decide to drive around a bit before we go to Children's Hospital. She is still hysterically screaming. I look in my rearview mirror. She has managed to get the top part of her seatbelt off. Find a place to park, fix her belt, just sit with her, uttering soothing words. That doesn't help. She decides she wants to talk to Daddy. I call him and he talks on the phone to her. She calms down, a bit. She says she loves him. She hands me the phone and narrows her eyes at me. Her message is clear. I don't love YOU, Mama!

We get to Children's and park. She insists on getting herself out of the car. As she's climbing down, she begins screaming. What? What??? Wait. Where's her kidney drain?

Well, between Radiation not pinning her drain back to her shirt, her tearing off her seat belt and me, not paying close enough attention ... her drain is sitting in her chair. It has been ripped out of her.

I am in the basement parking garage. UM, WHAT DO I DO NOW? ER? Surgeon's office?

I go up to the cancer clinic and ask them to page the nurse practitioner. Explain what happened. It has stopped bleeding by now. She calls the surgeon, who wants to know how much fluid had been draining. The number is acceptable, so no action needed.

Well, that's one copay saved. No need to go in for removal, since she also ripped out the stitches.


Conversation, forms to fill out, forms to sign. This may cause your child to bleed/lose hair/pee blood/ turn orange/ have kidney failure/die/ grow two heads.

Sure, sure. Let me sign.

Several frantic trips to the bathroom, an efficient, but sad, accessing of the port. Play with some toys. Watch some video. Get chemo. Get flushed. Get heparin.

Get food. Go home.

Have margarita.

(Me, not LW.)


My UU ministers are going with me, on this journey. And by “my,” I mean all of you who have podcasts I can find on iTunes. I have a one and a half hour drive, each way, to the medical center. I pop my iPod into its car holder and enjoy the sermon.

Today, Rev. Christine talked to me about happiness. I am fortunate that I happen to be one of the 50% of population who has a high “happiness” set point. That is a stroke of genetic good fortune and I’m grateful for it. I can certainly dip low (what, you haven’t been reading this blog?), but it generally bounces back to a good point.

The Husband is like Obama claims to be – his highs aren’t too high and his lows aren’t too low. It used to drive me crazy – what would it take to make this guy enthusiastically joyful? – but now I think that it’s probably what makes us one of the more functional couples.

After the morning sermon, I turn my iPod to shuffle for some tunes. Most everyone I know with an MP3 player that shuffles has had the experience of “iPod messaging” – receiving guidance from the song choices that come up on one’s iPod. (She says, only slightly tongue in cheek.)

“Keep on the Sunny Side” by Popa Chubby. Oh, come on. I’m taking my 2 year old daughter to her radiation simulation and first chemo. First chemo, again, I mean.

I push the button. “I love to laugh” from Mary Poppins comes on.

Is Rev. Christine controlling my iPod???

I sigh and let the song play. It’s good advice. There are times when I can cry, times when I can wallow, but not during the daytime, not when I’m with Little Warrior, taking her to treatment. She needs to see someone strong, confident, and yes, sunny.

At home, she can see me cry. But not when she needs her courage. Not when she needs her happy place.

It’s all about treading water. No long strokes, no deep breaths. Paddle, paddle, paddle. Quick breaths. Just think about what’s happening today. Radiation at 8, pay valet, get car, drive over to Children’s, get ticket, park, 1 elevator, 2 elevators, up to the clinic, forms to sign, port to be accessed, chemo to get.

Take a deep breath, and your head might slip a bit under the water. And if it does, it feels so good to not be struggling, that you go down a few meters, and then you’re thinking about the long haul and all that you have to do … packing and cleaning and 6 months of all this and what if …

And then you’re slipping farther down, deeper … and what if they do her scans in 2 months, and something has appeared?

And as you sink, you get heavier, you go down faster. And what if something appears and the radiation and chemo aren’t working and you have to go to something stronger harder making her sicker, and what if what if what if what if what if what if.

With all the strength in your body, scissoring your legs, reaching with big strokes of your arms, you break the surface.

And remind yourself … just tread water.

Thursday, May 08, 2008

Last Normal Night

Well, the echocardiogram went well, so we are cleared for takeoff. Tomorrow, 8 am, radiation simulation. Monday, we start radiation for real. Tomorrow, 10 am, the first dose of doxorubicin. Tomorrow, chemo starts for real.

Tonight, I can brush her hair and not scrutinize my brush.
Tonight, I can let her go where she wants, and not follow with a bowl.
Tonight, I have no need to feel her forehead.

When I tell myself, hey, it's just for 6 months, I'm okay. Except that I can't, because we have no idea what's going to happen. And then the worms come and I ask, will we ever come back to normal? What if, what if. What if I should be videotaping her right now, with pink cheeks and full hair because we won't see that again?

Damn worms.

Wednesday, May 07, 2008

Little Bits, Randomly Written While Writing a Term Paper

... and taking medical phone calls.

Best Gentle Suggestion By the BFF-DRE:

"Well ... why don't you just paint your fingernails blue?"

(Response to LE saying that I want to go get my waist-length hair cut off to about my ears.)

Poignant Moment of the Day:

I took LW over to my parents' RV for a visit. When talking about what they're going to do, I suggested that they take her for a nice walk. We're hoping we can begin chemo on Friday and when we do, we'll have to keep her out of the sunshine. For the next 6 months.

Do What the Angels Do:
In Blessing the World, Rebecca Parker tells of receiving a call to come help a young couple in a tragic circumstance. Her church secretary advises her, "Do what the angels do ... just be there."

My readers are brave. There are some who couldn't take being on this journey with me. This is where I let it all hang out, and I'm sure it's too painful for some. But my readers, you cry and pray with me.

You do what the angels do.

You know how antioxidants are so hip these days. All the cool kids are taking them. Well, if you're on chemotherapy or radiation, you want to avoid super antioxidant juices, supplements, etc. Why: What antioxidants do is prevent DNA damage. What chemo/radiation does: create DNA damage in cancer cells. So if you take antioxidants, you're helping to save the cancer.

(But take them to avoid cancer, if you're not on chemo/radiation.)

Safe Place
One of the cool things about our hospital is that every floor has a playroom, and every playroom is a "safe zone." While you're in there, no one is allowed to check your vitals, give you owies, etc.

I don't know how much at-home stuff there's going to be, taking medicines and whatnot, but I'm going to try and make my parents' RV the "safe zone" for LW. No owies. No meds.

Just love. And ice cream.

Doing stuff

First off, I started a dedicated blog called Love Through Action for this project of collecting good deeds for Little Warrior's book.

Second, I just signed LW up for a program someone recommended called Chemo Angels, where someone sends your child little notes and things to cheer them up while they're on chemo. If you have ink cartridges or old cell phones lying around, you can help them.


Not only have we made a decision, we feel confident in it, and our hearts are in it.

We're going for Big Children's Hospital. That's the doctor who knows more about the minutiae of Little Warrior's case. He eased our fears about secondary leukemia and -- this impressed us -- called the other doctor and discussed the case with him. After discussing some of the finer points of her case, doctor from Prestigious Cancer Hospital said that it was "sound thinking," and agreed with his logic.

When we told BCH doctor that we chose him, he was open about being happy. He thanked us for our trust and said that he would have been very disappointed if he hadn't been able to continue treating her.

That made us feel good. Feeling that your doctor genuinely cares for your child can't be discounted.

So, Wilms Tumor recurrence, Stage 3, going on Regimen I.

Just gotta get the echocardiogram tomorrow.

Tuesday, May 06, 2008

My Women

The Husband has two sisters, AdventureGirl and GlamourGirl. They, and his mother, Mother-in-Love, are all here in our house for the week, coming from Tucson, Vegas and Corpus Christi. I have to be honest …

I absolutely love it.

They are modern women with careers and lives, but they are following an ancient tradition. In times of illness, the women of the family would leave their own homes to go be where they were most needed. They would clean, cook, take care of children, and nurture the ill and their parents.

So have ours done. Figuring out the mounds of laundry we produce, shopping for shoes and giant foam balls for science projects. Buying a cooler for us to have in the hospital, taking messages from doctors, playing and playing and playing with their inexhaustible nephew and nieces. Park with the kids, walk with the dog. Taking The Princess and Bo Peep to the store so that they would have gifts to give The Boy on his birthday. Doing everything, so that I can call doctors and research regimens and go to appointments. And cry. They cry with me, too.

Driving home last night, seeing their cars parked around the house, it was as if seeing a protective brigade around our house. Walking in the front door, hearing their voices, it was as if walking into an embrace.

At staggered times, they will return to their homes, leaving us in the care of the home team, my friends whom they’ve gotten to know as they find room for their casseroles, muffins and soups.

These are the women of my family, the women of my village.

May you be so blessed as I.

Monday, May 05, 2008

"Just do the right thing,"

...was what they told my daddy when he was a little boy in Sunday School. I just wish I knew what "the right thing" is.

We met with the doc from Prestigious Cancer Hospital today. His plan was dramatically less aggressive, and he had good reasons for it. The Husband and I walked out thinking, hey, this is the way to go.

But I stewed and stewed and researched and researched all day. Because if we choose wrong ...

So, I'm using this space to dump my brain. Feel free to ignore and come back another day when I'm, I don't know, posting recipes or something.

Big Children's Hospital: where we've been treated the last two years. We like 'em.
Plan: Radiation + high powered chemo. Doxorubicin, Vincristine, Cytoxan, Etoposide. Chemo every week in the office, then every third week, chemo in the hospital, for 3 -5 days.
The Big Risk: Etoposide can, in rare cases, cause leukemia. And she could relapse.
Doctor: Very experienced with Wilms' Tumor. Very familiar with her case.

Prestigious Cancer Hospital: where LE's Big Brother is a Big Poohbah. (But not a doctor.) We'd be treated like royalty there.
Plan: Radiation + less aggressive chemo, including 2 she's already received. Doxorubicin, Vincristine, Dactinomycin. Chemo every week in office, no hospitalizations.
The Big Risk: Not high powered enough. And she's already taken 2 of them. She could relapse.
Doctor: Very experienced with pediatric cancer. Not very familiar with her case yet.

I'm leaning toward Big Children's Hospital. The doctor talked to The Husband for half an hour today, explaining every step of his decision-making. It all seemed very well-thought-out.

"I wish one of the doctors were a mustache-twirling villain," I told BFF-DRE. "Then we'd know."

But they're both good people, good doctors.

For me, it comes down to: Big Children's Hospital Doctor knows the most about Wilms'. And knows the most about LW.

For The Husband, it comes down to: if the results were bad, which choice, had I made it, would allow me to live with myself?

We agreed ... in that situation, if we had chosen to go with Prestigious Cancer Hospital and it went south, we'd feel that we had chosen wrongly, that we'd wimped out.

With the other choice, we'd feel that given the information we had at the time, we made the best decision we knew to make.

Decision feels mostly made. But we're going to call Big Children's doc and ask him his thoughts about the risk of secondary leukemia in the morning.

Spirit of Life, come unto me ...

And bring wisdom. Please.

Sunday, May 04, 2008

Birthday Boy

Today was The Boy's birthday. 12 years old. And aren't kids amazing ... "This was my best birthday ever!" he said. Two of his aunts, two and 1 grandfather were all here. He knows they're here because of Little Warrior. But we're all trying to enjoy what we can.

He is an amazing kid. Really, truly. We "woke him up" (he was pretending to be asleep as is our tradition) with a birthday cake -- butterscotch cake with butterscotch frosting, in honor of the the Butterscotch Krimpets from one of his favorite books, Maniac Magee.

It was a good day; a good weekend. Enjoying the rare privilege of all being together.

But tomorrow, we dive back in to reality. I have been studying all the info on recurrent Wilms' Tumor that I can. Studying the effects of chemo is not for the faint of heart. One of the proposed drugs is a derivative of mustard gas.


I spoke to my godmother today. She is blind from macular degeneration and her husband, my great-big-gentle-bear of a godfather, has Parkinsons and dementia and has to live at a home, because he occasionally has rages. But the medicine seems to be working. He lives in the past, she says. A music lover, he remembers every song he ever knew. "All I have to do is say one line, and he remembers the rest," she says. She adds, "But he can't remember what he had for lunch."

We talk about our individual experiences and about how we are learning to live "the new normal." I ask her, "But are you able to enjoy things?" She says yes. She even went to a concert the other day and thoroughly enjoyed it. We are on the same page, learning to cherish every bit of enjoyment we can get.

It's a cold and a broken Hallelujah for both of us, but still, we find our Hallelujah.

Saturday, May 03, 2008

What You Can Do

Thank you for all of the prayers and the requests to help. Please don't think I've been avoiding the latter, or blowing off the offers of beads, cookies, anything. I am humbled by your offers and have been giving some serious thought to what we need.

You know what I need? A way to explain to LW when she's older that even though I empathically do NOT believe this happened for a reason ... short of finding the cure for all cancer, there could not be a reason that would justify this happening to her ... even though this didn't happen for a reason, good still sprang from it. As good can spring from heartbreaking situations.

At the risk of sounding like a lifetime movie or a book by Mitch Albom ... I want to give her a book of good deeds done in her name.

So, my friends ... you asked, here's my answer. Do a good deed, one you wouldn't ordinarily do. Give a banana to the homeless guy, take a Starbucks gift card to a nurse and ask her to give it to a Mom or Dad who really needs it. Mow someone's lawn.

And then tell me about it. You can post it here, or post it on your blog and send me the link. Or email it to lizardeater at gmail dot com.

I'll compile all those and get a book printed. And when she's old enough to ask, "Why?" I'll explain that there is no why. But that good things can still result. And that there were a whole bunch of people sending her love, and the way they showed that love was through action.

Friday, May 02, 2008

We are on holiday

Or is it furlough? In any case, we are home and nothing has begun, yet. Chemo has not begun, radiation has not begun. Aunt SIL is here, Mother-in-Love is here, and tomorrow, my parents will be here.

Sunday is The Boy's birthday. We'll have a lovely family party.

So, it is a bit surreal. We are all together, as if it were Christmas. And we do have a birthday to celebrate. And Little Warrior is doing incredibly well, thanks to Aunt SIL, whom I hereby change to "Aunt Amazing." My little scamp didn't even want to sit upright ... and within a couple of hours, Aunt Amazing had her up, walking, playing ... LW even walked upstairs on her own motivation. Aunt Amazing is -- literally -- a marathoner, but by midafternoon, she had to lie down for a lap. LW wore her out.

That's a good kind of energy to have. May it serve her well.

Tonight, we will tell the children that the cancer has returned. Then we'll watch "Why Charlie Brown Why." And eat homemade pizza. Kneading the dough, stripping oregano from my windowsill plant, scissoring in basil from that plant ... an ordinary thing, rendered pure pleasure by realizing how fleeting the experience will be.

It's a jolly holiday. For the most part.

Thursday, May 01, 2008

We're Home

Too tired to write anything interesting. But we're home, we're home.

Re-entering Cancer World

Well, I am sitting in our hospital room by myself. LW is in surgery to get her portacath.

I was doing just fine until the surgeon intern began asking me questions. So she's had a port before? Why is she getting one now?

And I discovered that I do just fine, and can even think that I'm doing better than I think ... as long as I don't have to talk. Apparently, there is some loose wiring. I open my mouth to speak, and tears begin pouring out of my eyes. I should call home and see if the garage door is going up and down.

And it just all hit me. Because this isn't just a simple procedure (although it is, or should be). This is opening up the big old double doors and being escorted back into cancer world.

I have been somewhat shielded from it this week. They put us on the 11th floor, surgery recovery, rather than 9, pediatric oncology. "Maybe it's a good sign," I had said to The Husband. One week ago.

This is her 6th time to go in to surgery. Six times, and she's not even 3 years old.

I keep a site to give friends and family updates on how she is doing, without all the sturm and drang (and honesty) of this site. I was half-consciously looking at it last night, along with talking on the phone, putting on a video for LW, eating a balance bar ... and for this brief moment, unthinking, I felt sorry for the family I was reading about. And then I remembered it was us. Is that weird?

So, here we go ... port inserted, hand sterilizer at all the kitchen sinks. Bubbe and Pops are on their way, with RV, to stay in a park 15 minutes away, to be our "beck and call" girls, to quote Pretty Woman. My dad loved that reference, last time.

My parents turn 78 and 79 this year. They have already buried one son. Haven't they had enough pain? Don't they deserve to be out taking trips, and enjoying this time?

Oh, it’s a long, long while, from May to December,
And the days too short when you reach September.
And the autumn weather turns the leaves to flame.
One hasn't the time for the waiting game.

Days dwindle down to a precious few...
September ... November ...

To be a grandparent in this situation is a double whammy. Your little grandchild, that you love so much, in this is bad enough. But you also have to watch her parent, your child, suffer. I know that it is an overwhelming feeling of powerlessness. Just about anything else, they could -- and have -- given advice. Marriage, job, the need to prune the bushes in my backyard ... but they can't give advice on this. They have none to give. It is outside their experience.

Aunt SIL is still in town, staying with the older three. The DRE-BFF is marshalling forces, making help schedules, and has apparently already cooked so much (and got others cooking), that my freezer is completely stuffed. She has to foster some of the dishes in her own freezer, which I think is touching, but also completely hilarious.

Everyone is at battle stations. Ready, set ...