Six Months, One Week

I planned all last week to make a six month update. I was going to write about how my mom had decided to continue on with chemo despite her earlier plans, how her terrible allergic skin reactions had become somewhat manageable, or at least tolerable compared to the alternative of stopping treatment.

Six months. Six months. I couldn't stop trying to wrap my head around it. Six months ago we'd all begun planning for her to be gone by now. We never thought she had six months. But her she is! I suddenly felt like I'd been given the gift of time all over again. Time to start fresh, forget what I thought I knew, and just enjoy. Invincible.

Six months, one day brought a big scan. No one expected the results until this week, because that's the drill.

Except that her Neuro-oncologist called within a few hours. And he canceled her chemo 36 hours before she was to start. And he told her to get an appointment asap @ UCSF. And while he didn't mention the two shiny spots that appeared last time, he did say that there is regrowth at the original site. And that he was leaving for vacation the following day and he'd see her when he got back.

She told him that she wanted to continue with chemo, that she'd made plans around it, that she didn't want to just sit around doing nothing, that she had a lot of fight left in her.

No.

And so now for a week I've been walking around in a daze. I'm trying to process it, but my mind can't wrap around it. I was energized. I had a new game plan. And now that's all gone.

I'm lost.

Uh Oh

Yesterday I learned that Olive can drink out of a straw. I learned this after she drank a good third of my venti Tazo "Awake" iced tea.

We had a very cranky afternoon but her heart did not explode.

Good times.

Not Fine

Please excuse me while I vent.

An individual's journey with cancer is as unique as the individual. Stage IV brain cancer is not the same as stage IV some other kind of cancer.

FACT #1 My mom knows her name.
FACT #2 She knows mine too. And the kids. And J's. If she knew your name at some point, she still knows it now.
FACT #3 She can walk.
FACT #4 She can feed herself.
FACT #5 She can use the bathroom by herself.
FACT #6 She is not bedridden.
FACT #7 She can travel in cars and airplanes.

FACT: Brain cancer can kill a person without ever leaving the brain.

The above is amazing and wonderful, but it does not mean she is fine. There are many other shitty ways cancer can fuck with a person. I know how incredibly cruel it can be to watch a loved one die of cancer, to be bedridden and incapable of taking care of the most basic of needs. I've been there, as an adult, just a few years back with my grandfather in his final weeks. What my mom is going through is not that, at least not yet, but that does not automatically mean her journey is full of rainbows and cheery birdsong either.

She is not okay. She is not fine. Trust me.

Steps

She turned herself around, let go of the wall, and took two steps into the middle of the room. And then she just stood there, prairie-dogging for a good 15 seconds, before dropping down and crawling over to me with the biggest grin on her face.

And then I cried.

It's Not a Penis, It Just Looks Like One On the Internet

For Mother's Day my amazing son wrote (in Kindergartenese), illustrated (in green highlighter*), and bound (with staples) a book for yours truly. And quite the egocentric flip book it was.

Awww...he made a flip book!

"This is me! And this is me! This is still me too!" Flipping, flipping, flipping. Uh oh. This page no writing.















Phallic art! My favorite!


"And this is our house!"


Ehh...












This is our house. Where do you live?


Somehow my dear husband senses that I'm thinking about peni and comes running.

Seriously dude, there's no fire. Go on now and run back to wheres youse cames frum.

"Look at this beautiful representation your son made. OF OUR HOUSE."
"Our house?"
"OUR HOUSE."
"It has grass! See the grass! Hahaha! Grass! No wait! No wait! I meant bush! See the bush! Hahahahahahaha!"

Whatevs. You're a penis.


*Highlighters are still so banned for being NOT washable and having been used as late as 4 to draw on the furniture purposely and more than once. If not drawing with highlighters keeps him out of an ivy league school I'm okay with that.

The Cracker '09 Recap

JANUARY My first time ever out-of-town without my Cracker, J gets this call. The Cracker has stuck a pencil up his nose. J wants to know "How do I get a surprising amount of blood out of a school uniform shirt?"

FEBRUARY Reminder that plastic tools = real damage. The Cracker dismantles the whatchamacallit that encloses the gas shut-off for the living room fireplace. How he managed to unscrew a hollow male shaped part that is flush with the wall with pliers and then pry off the caulked-on plate in less than 5 minutes is still beyond me.

MARCH Off apparently. Or more likely blocked out.

APRIL School nurse calls. "You need to take him to get x-rayed." He tripped over his own (big ol' puppy) feet while walking in a single file line to lunch and his a finger is very swollen, very discolored, and no longer bendy. Oy. Dx = "Minorly sprained, badly bruised."

MAY Instead of brushing his teeth, the Cracker takes an oral syringe, fills it with water, and injects it into the bathroom electrical outlet. I hear there were alarms, crying, smoke, and water sizzling in the wall and shooting out of the outlet. (cough I-was-at-Target.)


At the bus stop this morning my question for the more seasoned mothers was "When will common sense and knowing-the-fuck-better finally prevail?"

"It doesn't. And then you hand over your car keys."

Insurance, people. Medical, dental, home, and auto. Make sure you have great insurance.

Our First Oliversary

We started the day with our weekly pilgrimage to baby storytime. Instead of participating (she has stomped her feet and flapped her arms on occasion in the past when she was happy and knew it) she poked a gigantic 5 foot stuffed black bear that lives at the library in the left eyeball for much of the 30 minute program. There was also squealing, and pointing pointer fingers that proclaimed over and over "DOG!" "No baby, that's a b-b-bearrr." "DOG!" Pappy, aka my dad, came along too.

Olive was hungry (because the girl still eats no less than bi-hourly)(and poops thrice daily) we decided to bagel, because if you're turning one and your mean parents won't let you have pizza, what else would you want? (Play along and don't say cake.)

While we waited for our food, Pappy presented her with her first flower from a boy.























(Did you know that Olive, at a mere 8 months old, inspired us to invent a new term? Bagel booger. It's just what you're envisioning, only stickier. And boogeryer.)

Our bellies full of carbs, the girls (my mom, Olive and I) headed off for more carbs at high tea. My mom always comes up with great excuses for us to go. Olive's first birthday was one of her better ones.
















(PS My mom wants me to share with tea-goers of the world that the high tea at Neiman Marcus (where we took Olive for high tea in January) at Union Square in San Francisco now sucks. It used to be way cooler when I was a kid, but now it "sucks." It was even acceptable a few years ago when we took the Cracker. But now it "sucks." PSA over.)

From the tray I shared with my daughter a slice of radish. She looooved it. Score me! While my mom and I ate the good stuff, Olive had her very favorite, banana sucked through a mesh bag. Now, I am not crazy, I do not think she is going to choke on a squishy banana. But Olive? She has this thing about bananas. In a bag? HER FRICKIN FAVORITE OMG NOM NOM! Outside of a bag? Not to be trusted. Poke, poke, launch!
























I am not totally mean. I did give her a few tastes of clotted cream. "Do you think she likes it?" "Mom, SHE'S CLAPPING. Yeah, I think she likes it just fine."

Outside she had a blast petting a fake dog. Olive is obsessed with DOGS. The girl has this crazy squeal that is reserved only for DOG spotting.























(Too bad we are not dog owning* (insert your own more PC term here) people. We love dogs, but we are not up to sharing our home with one. We love your dog, but we do not want our own dog. Our house is plenty full with cat gak and piss and I have more crazy than I can handle right now. But! if your dog would like to go for a walk, Olive and I would love to take him. Or her.)























The hat is hiding banana bag hair, her shirt is untucked, and her skirt is too long even though it's 12-18 mos. But her shoes are peep-toed and silver = awesome. (Not to be confused with her silver ballet slippers. Totally different. The toe-peeping is totally better in the dog picture.)

We did some boring stuff and then picked up the Cracker from school and went to eat a-gain! This time it was my choice, since I did birth her and all. (Okay, so really she kinda birthed herself since her head was already out and no one KNEW IT and I didn't push, just didn't sneeze or cough because OMG she's on her way and people needed to gown-up and put on gloves actually don't even breath because we don't want her to land on the floor. But I should still get to pick the food.)


















Olive signs "all done!" Yes, we know this isn't the official sign that deaf people use, but it is the sign her big brother used back when, and we have chosen to pass it on to her as well. So we've broken two children. Deal.


















Happy birthday my little Olive. Believe it or not, having you to keep me company all day long keeps Mommy sane. Not only do you love me in that special way that babies love their mommies, you crack me up. Lately I especially love watching you try to cram yourself into the Little People house. I think it looks fun in there too! But for your second year of life I will try to teach you about scale.

I love you. xoxo

Q & A with Heidi II

What about your mom's health?

There are signs. I see them, my dad sees them too. I still ask myself if it's just the stress of it all. Maybe it's stress. People under extreme stress are not themselves. Is it stress? Or is it tumors? It could be stress, right? But even my stupid heart know that stress doesn't make you go from wide awake to SNAP! bent in half at the waist, nose at your knees, in a mini coma. I have made myself sick and crazy, and the only conclusion I have been able to draw is that it's inevitable. Impressive, eh? I'm not a doctor, I don't know when, but things are not getting better and they are not even staying the same. They are worse.

I'd like to say that thankfully she has no idea, but I think she does.

Today, Thursday, she will take her last dose of chemo round three. The scan taken after radiation and the first chemo round showed two new spots. Officially they aren't cancer until you have them biopsied, but you know, patient with aggressive brain cancer is sporting two shiny somethings. Yeah, that. Turns out my mom is allergic to the chemo drug of choice (Tem.odar) and breaks out in a horrible, itchy as hell rash that persists for weeks, the likes of which even her doctors (*top* experts in the field of this very specific type of tumor at UCSF) have never seen. The only other option she's been presented with to date is the gamma knife, which is a big hell no nuh uh not even gonna consider it. The drug they've been giving her (Hydro.xyzine? or is that something I've taken?) to combat the rash is not cutting it. Standard chemo protocol would be 12 months/rounds and then reevaluate IF you make it that long. Before she even took the first dose there was a lot of I'll give it three months and then I think I'll be done talk.

My mom's goal was to make it to Olive's first birthday, April 16th, 2009. One week from today.

Q & A with Heidi

How's your mom?

In a word? Angry. No, wait, I take that back. She is fucking angry. Two worder.

In March her favorite topic was how unfair it is that people with DUIs can drive and she can't. April's topic is how unfair it is that people can take Claritin and Benadryl and drive and she can't.

Not. Kidding. Not even exaggerating. Hour after hour after agonizing hour.

No matter how much she pleads, do not tell her the truth. You know, that a few months ago she had a craniotomy, that they removed 15% of her brain, or that just like before she can technically see but not process things on her left side, or gently suggest the possibility that most patients will eventually have seizures again despite antiseizure medication even though you know she won't, because OMG do not go THERE.

Have you talked to a tumor lately?


Yesterday, as I pushed Olive around in a cart at Target, (ignoring her cuteness, shopping, and agreeing over and over again on the phone with my mom that people who take allergy medication and drive should be beheaded,) I kept crossing paths with another mom who had a baby close to Olive's age. She was carrying her baby in an Ergo, and it seemed like every time I ran into her she was kissing the baby's head. I had this ridiculous urge to tell her that I have an Ergo too! In my car! That I also love absentmindedly kissing Olive's head as I shop! But that I can't do that and talk to my mom on the phone at the same time because Olive is all about phones and buttons and will not leave them alone and that I am not the shittiest mom ever just trying to be a good listener to my mom who has cancer. Do they make signs for that?


(Olive has declared nap time over. More to come, because there is so much more...)

Old MacDonald Revisited

For the longest time the Cracker's word for farm was E-I-E-O. Me = pile of goo.

Oh Olive. You go girl.

A Very Happy Birthday

Now you are six.

I Poke You

Little Big Man

"Dad, do you have a broom? The Cracker wants to sweep."
"Do I have a broom?!"

She Speaks

On the day she turned 10 months old our little Olive pointed right at the neighbor's dog and proclaimed "da!" Oh, I thought, how weird; it was almost as if she was trying to say dog or something. The dog's owners, parents of four, including twins a month older, flipped. "Oh my God she totally said dog! She's talking already???"

Nah.

And in the three weeks since it has become clear that Olive IS talking, and that she is not only understood by us but also others. WTF?

"Ah da" is, of course, all done. It is most commonly used to express that her high chair tray is empty. It has also been used, very sadly, on more than one occasion during wiping when she had diaper rash. That'll break your heart, your 16 pounder crying "Ah da! Ah da! Ah da!" The girl is cursed with my crappy super sensitive skin and the diarrhea her brother brings home from Kindergarten. Sad Ollie.

"MmmmmmmmMA!" means more (food) or "I see that you are eating and haven't offered me any. Dude!" Sensing a pattern here? Anyone?

She says "ma/mama/mom" a lot, mostly when things aren't rosy, and of course her favorite happy caretaker word is "da/dada." I swear to God she bats her eyes and has this "you're my hero!" look as she breathlessly slo-mo whispers "da" at J and then lunges from my arms to his. It's so disgusting it's actually cute. But disgusting.

Speaking of crappy skin, my traveling eczema recently took up residence in my belly button, which is especially itchy since I have scars there from surgery. Olive has decided that my reddened innie is a third nipple and keeps trying to nurse from it. Watching her dive bomb it is deeply disturbing. Experience with this? Anyone?

Yeah, I didn't think so.

Three Months

Last week marked the three month anniversary of it all; the realization that something is wrong, my mom's collapse, my dad taking her to the ER, the scan, the initial diagnosis, and yesterday, the surgery.

On the mindfuck continuum I think three months? That's all? On the we can hope for a year timeline, three months are gone and never coming back.

Predatory Lending Hits Home

Here are a few words I never imagined stringing together: MY FIVE YEAR OLD NEEDS A BAILOUT.

We get a "final notice" from the school breakfast/lunch program today. Funny, I don't remember seeing a first notice. Seems the Cracker, who, by the way, has breakfast at home every day and takes a sack lunch every day has ***unpaid*** breakfast bills.

It's gotta be a mistake. Right?

"Have you been having a second breakfast at school?"
Mumblemumblemumble.
"What?"
"Nothing." Looks at his feet.

Let me try this again.

Excitedly, "So whadya have?"
"Oh! It's great! They always have toast, and oatmeal...one time we even had pancakes!"
"How did you pay for it?"
"Well, I didn't have any money soooooo Gaige taught me how to charge it."

Excuse for a moment while I choke.
Charge? It?

Face drops, guilt-ridden. "But they don't let me anymore, because I didn't pay my bill."

ARE YOU FUCKING KIDDING ME?


Some details:

He knows now that it was wrong, and he feels bad.

From what I know, it isn't the school directly, but a private contractor that runs the meal programs.

But then again, we've never used these programs before, so what the fuck do I know.

It's definitely breakfast, not lunch. He's not pitching his lunch and playing if you don't give me school lunch I won't eat today.

What if he had food allergies? Like eggs or something? Dairy? Gluten? Wheat?

When this is happening is a mystery to us. He gets on the bus at 8:41. The bus arrives at 8:50. Kindergartners are escorted off by their teachers, who then take them to line up and enter the school no later than 8:55. School officially begins at 9. So...? We'd always assume the breakfast program took place during before care hours, you know, the before school child care program for kids whose parents work. I don't work. But again, what the fuck do I know? Apparently, not a whole lot.

Yes, I am PMSing right now. Thanks for noticing. I am so friggin bloated.


The bottom line: We, his parents, did not authorize it.


I should add right here that we live a cash only lifestyle and have since 2003. We do not charge anything, not for the miles, not for the rewards, not for the cash back. Nothing. Airplane tickets and other higher priced items go on our debit cards. We have extra cash in our easy to get to savings for emergencies. We do not even have charge cards in our names, initially because once paid off we didn't want to be tempted, but now because we haven't found a reason for needing them.


The grand damage is a whopping $3.15, 3 meals at $1.05 a piece. But never before has there been so much principle involved! Principle people!

You can bet your sweet ass I'm going to the school about this. Assuming it is an independent contractor and not his school that would take a loss, the Cracker can fork over $3.15 in previously owned Matchbox cars. You go around allowing kindergartners to open a new charge account without their parent's permission and I think you deserve to be burned.

SSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!

It's Good to be Home

(Audio only. Transcript follows.)




Why yes, yes he did.


Answering machine message:
"Hi, this is XXX, the school nurse at XXX Elementary School. Just wanting to touch base with you in regards to the fact that I saw [the Cracker] today. Nose bleed. Ummm...I think he may have, possibly, put a pencil up into his nose..."

A Night Without Fog

seems kind of creepy and wrong. Guess I've made most of my visits the last few years closer to the summer months.


















PS No tourists tonight.

Details

My dad told me today that he thinks I should be here when she dies.

My Friday Night

Greetings from California.

Tonight, for the first time this trip, I finally got my lazy ass down to visit the bridge. It's something I usually do every night.

Hello bridge.


















It was foggy and rainy and damp but surprisingly warm, and the smell of wet eucalyptus was everywhere.

It would have been a much needed clear my head moment had there not been a group of super annoying loud tourists who just would not leave. I guess I still think of Ft. Baker as for locals only, and the Headlands for everyone.

Oh well. Maybe tomorrow.

Caught

in her brother's room.

Signs

As I was talking to her on the phone, two nights ago now, she was zoning out, more out than in. If I didn't know any better I'd assume she was tired, or doing something else while we were talking that temporarily focused her attention elsewhere. But I do know better now because we've seen this before, a lot, in the months before her diagnosis.

Believe it or not, there is an upside: she has no idea. The zoning out, the mini comas, the strange behavoirs...she is neither aware nor remembers afterwards.

Cancer...woo hoo.

The Very Bad Daughter

My mom is dying. I don't have hope. I want to, but I don't. This is going to happen. But I can't grasp it. I cannot imagine not having a mom anymore.

Do you know how much it sucks to not even have faith in her that she can overcome it? That I've already written her off?

...

They never see tumors that big, except on people who are already dead.
Her steroid regiment (for lupus) most likely kept them from finding it sooner.
Not that it would have made any real difference anyway.
There wasn't one tumor, there were multiple tumors.
Except the rest were smaller, and more importantly, inoperable.
They told her this the day she started treatment.
She started treatment, radiation and chemo, late, because they were closed during the holidays.
She has radiation burns on her face.
She won't take the pneumonia medication, because she's afraid of seizures, because she wants to drive again someday.
She won't be able to drive again, because while her left field of vision is intact, her brain can't process things on her left.
My dad and I saw this first hand in the weeks before she was diagnosed. When she was driving smack down the middle of a 4 lane, 55 mph highway at no more than 20 mph, with the Cracker in the back seat while my dad was screaming at her, cars honking and flashing their lights.
For, like, 10 minutes.
I was watching it in my rear view mirror; she was supposed to be following me.
Why didn't he grab the wheel and force the car over?
She has always said she can't imagine life without books; she is an avid reader who no longer reads.
The radiation and chemo are starting to really kick her ass. She's on week three of the initial six.
When they start the maintenance phase, chemo will be 5 days on, 23 off.
But the amount of chemo drug they give her then will be triple what she's on now.
She's having headaches again.
Which may mean a lot of it has already grown back, or that the other spots have grown.
Headaches = increasing pressure from growing tumors.
It is not uncommon for this type of tumor to grow back to pre-surgery proportions, or even bigger, before starting treatment.
Which she started late.

And the worst for last: she is having left side weakness. BAD!BAD!BAD!BAD! BAD!

...

What's going to happen when I call her cell phone? How long until it stops ringing, disconnected? My mom and dad are on a family plan, they share minutes. Is he seriously going to have to call and tell them he no longer has anyone to share minutes with?

...

I'm a planner. I need to plan.

I have no California appropriate funeral clothes. I start looking online. Spring is hitting the stores, so everything is bright and obnoxious. Black is gone. So I order a dress, online, from Black House White Market. And I haven't worn anything from there since middle school back when it was just White House. And I usually have to try on a gazillion dresses before I find one that fits my ill-proportioned body. And I'm cheap. But I want something nice. But fuck if I'm ever going to wear the dress I wore to my mom's funeral ever again. So I find this dress that looks just okay online, down from $178 to $59.99, and they have random free shipping, and I can return it in Albuquerque if it doesn't fit. But I can't handle actually driving to a store to try it on with bright lights and mirrors. I want it anonymously delivered to my doorstep. I just order. I don't measure. I have no idea what size. And it comes. And it fits, like it was made for me, or at least me wearing with muffin sucking underwear. I don't even try without. I even already own the perfect shoes, though as Jason pointed out, I have to go bra shopping. Blech.

Ollie has several options if it's in the next few months before she grows out of them. yeah us for thinking black and other dark somber colors are "cute" on a baby. The Cracker has a shirt that works if it still fits, and I bought him pants two days ago that he has yet to try on.

We are going to work on Jason too, soon.

You know what? I don't even know if there is going to be any funeral, or any service. I just assume there is. Because that's what people like us do. But I can't ask her. And getting my dad on the phone alone is nearly impossible. She doesn't want us talking about her, and so she makes sure we can't. We have to sneak phone calls, and lie, but I don't blame her. I totally understand it, because I inherited that from her.

My friends are aghast. I am buying clothes for her funeral now, while she's still walking around. But I explain it's inevitable, and I need it to be done. I do not want to be doing this on her deathbed.

I'm trying to be ready...for my mom to die.

...

I am flying out to California on Tuesday for 10 days. I am taking Ollie, leaving the Cracker with Jason. I have never, ever left him before. There are a million reasons why I can't take him. I want to but I just can't. I'm too tired to list why right now.


All of this...surreal doesn't even begin to describe it.

Happy (Belated) New Year

I will return with heavy, depressing posts soon.

Sweet!

Skip Hop's Hare Baby Comb & Brush Set