The Kid is Alright

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In August, sometime after the mastectomy (but before my reconstruction)…I called about Pax.  If you recall, at his two-year appointment (last November) his pediatrician had been worried about his speech delay, and wanted me to get hime tested.

I waited.  Andwaitedandwaited.  I was so sure that his speech was just around the corner…Pax understood everything so well, and could communicate in a variety of clever ways.  While he wouldn’t use words, he had been mimicking his brother’s disappointed “awwwww!” sound for over a year.  And Pax is funny.  Like, real attempts at humor.  For example, I’m changing his diaper one day and all of a sudden, he snaps his legs shut.

“Peepee” he says.  “Dawn.”

“Your peepeeis…gone, Pax?”  I’m trying to understand what he’s saying.

“Hide” says Pax.  “Dawn? Dawn?”  And now he’s holding out his hands, palms up, looking around frantically.

“Ah,” I say, comprehension dawning.  “It’s hiding.”

“In!”  “Wa-wa!”

“Your peepee is hiding in the water?”  I sigh.  Diaper change games are not my favorite, and knowing Pax, we could be here a while.  He’s learned from his brother that peepee anything is funny.  I’m eying the fresh diaper, wondering if I can wrestle it on him somehow.  Suddenly, he kicks his legs back open in a big V:  “DA DAAAA!!”

The peepee is back in business.  I crack up.  This exchange repeats several more times before I can get the diaper back on.

But this exchange is a pretty good example of how Pax talked:  One word sentences.

Around the dinner table we’d talk about our day, and Pax’s contribution was often all “Ball!  Raines!  Fun!” and we’d know something fun happened with Raines and a ball.  But there were no linking words, nothing beyond a single syllable, and I’m not sure I could even consider this set of words to be the doctor’s “linking words together” requirement.  There was no sentence structure at all.  And since he’s almost three…I called.  Haverford child services and I made a date to do an evaluation a few days after my reconstructive surgery.  Two weeks.  That’s all it was.  Two weeks.

In that two week timespan of course, Pax’s language exploded.  He went from “Ball! Fun!” to talking incessantly about “piderman”.  Apparently “piderman FIGHT!”  and “piderman tchoot veb”  but “piderman NOT fwyy only soup-man fwyy” etc. etc. etc.

He went through his whole Spiderman routine with the child development folks, including the shooting of webs, a few mad dashes to the kitchen and back and some serious jumping/breakdancing moves.  “Yeeeaaaah…..” the main evaluator said, eyeing Pax, who was now down on the floor engaging her stuffed bear in a pretend conversation with his Piderman, “he’s not even close to qualifying for services”.

Well.  Yay.  They ended up doing the full test just for fun, and it turns out that he’s ahead of his age group in pretend play and motor skills.  Color me NOT surprised.  But it was gratifying nonetheless.

The morning after his evaluation we’re having breakfast, and I ask P if he’d like more toast.  “Yup” he replies.  Then he thinks about it.  “Actually…fine” he says, waving his hand at me dismissively.

Fine?  Actually?  Well, that pretty much sums it up.

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Posted in Pax - 2 Years, Talking | 4 Comments

At Some Point, All of the Joking Stops

This past week was hell.  It’s incomprehensible, really.  I feel as though I’m being a bit melodramatic, but when I look back….

It was awful.

The first few days (when you’re on nausea-watch) were actually OK.  The new anti-nausea drugs are amazing.  I experienced some queasiness (and nothing tasted good) but it was a far cry from my mom’s experience.  I was pretty manic from the steroids, so mom and I spent the first two days going on walks and shopping.  Shopping.  Truly.  I was a machine.  But on Friday, day three, the steroids stopped and suddenly, so did I.

It turns out that I’m one of the few people who really have trouble with steroid withdrawal.  In hindsight, no surprise (I take children’s Claritin for allergies), but I was surprised at how bad I could feel.  I had really, truly believed that I would be one of those people who “skate” through chemo – I’m so goddamn healthy and positive and can bounce back like a champ – that chemo?  Would be tough, sure, but do-able.

I certainly didn’t expect to find myself in some sort of four-day hell, alternating between rage and hopelessness, feeling a sense of loss so profound that I could barely look at myself in the mirror.  I would burst into spontaneous tears, multiple times a day.  Pax would ask, “Hug, Mum?” and I would ignore him.   God, just remembering that makes me feel physically ill.  How could I do that?  To my little P?  I’ve never fully understood depression – true, clinical depression – but I feel as though perhaps I’ve gotten a taste of it.  This…feeling….crept up insidious and cruel, and robbed me of who I am.  I’ve never felt so naked and alone and despondent – totally unable to rally in this “fight” against cancer.  There was no fight in me.  Just tears, more tears, and anger.

On top of that, there was the “normal” chemo stuff to deal with.  The body aches and “flu-like symptoms” associated with Taxotere hit me pretty hard, although it was tough to gain perspective since I was so mentally beaten.  I’ve heard of people comparing chemo side effects to pregnancy:  queasiness, everything tastes and smells funny, exhaustion, etc. This is all true.  However,  the key difference, I think, is that underlying all of the pregnancy symptoms – as hard as they can be –  is this fundamental quality of vitality – you are literally growing a life!  Chemo was a stark contrast – some of the symptoms may have been similar, but the underpinnings are all rooted in death.  I felt sick, in some elemental, primitive way.  I’d stare at my face, not recognizing the look in my eyes.  It would cross my mind that once my hair is gone, I’ll look more animal than human.

This is hard.  So hard.  And frankly, something I don’t want to do again.

You start calculating percentage points:  If I have a 17% chance of recurrence in the next 10 years without chemo….does one chemo treatment account for…another 5% reduction?  3%?  Is that enough?

This is all nonsense, of course. There’s no such thing as “chemo lite.”  (I already asked.)

At some point…things get better.  It’s shocking, really.  How one can be in such a dark, dark place and then – a few critical hours later – be laughing with your girlfriends on the phone, and irreverently referring to those four soul-sucking days as “The Crush?”

Those little cells of mine.  Down, but not out.  It’s amazing.  Already my fervent, “I WILL NEVER DO THIS AGAIN, MIKE!  MARK MY WORDS, I’M DONE WITH CHEMO” refrain is fading, and I’m rolling my eyes at myself.  I can be so dramatic.  GOD.  Because it’s just chemo, for heaven’s sake.  How bad can it possibly be?

One down, three to go.

Posted in Breast Cancer | 25 Comments

Chemo 1, Day 1

So.  We did this thing.

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Mom flew out, the sitter arrived, and then Mike, Mom and I went to Penn.

Mike and I posed awkwardly for pics.

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I’m smiling, but not sure why.  The whole thing was so bizarre, I guess, that laughing is my defense mechanism.   “OMG CHEMO!  So funny, right?”  Yeah.  Breast cancer is a real hoot.  HA HA…ha.

Actually, what I do find hilarious is that before checking in for chemo, we snapped pics for an ANMJ article next week.  Not there’s dedication to a cause, LOL!  (Or just a crazy lady.  You pick.)

And then, once we got in there, met with the oncology nurse and were escorted into our private chemo room….things got a bit worse.

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The day before chemo, I have to start taking steroids called Decadron.  These little pills taste awful, have a terrible after-taste and make me feel revved up.   During the day I can keep myself busy (or walk like an Olympian or clean my house like crazy-Nicole when pregnant), but during the night they make for fairly terrible sleep.  The morning of chemo, in addition to my Decadron, I also have to take a pretty powerful anti-nausea medication called Emend.  (Yay for this, BTW.)

Once you sit down for chemo, they first fill you up with a ton of drugs to help ease the chemo side effects.  These drugs are all given by IV:

1. Benadryl

2.  Pepcid A/C

3. A long-lasting anti-nausea medication Alexi? (similar to Zofran).  This bad boy is supposed to last three days.

At some point, they also want you to swallow two more Decadron steroids.  Apparently, allergic reaction to Taxotere (one of the chemo drugs) is pretty common, and the steroids are supposed to help (along with the Benadryl).

Well.  Oddly enough, in this entire cocktail mix…it was the Benadryl, the damn Benadryl, that was – by far!! – the worst.  (And they only gave me a half-dose.)  After the Benadryl hit, there was no more smiling or joking or laughing and I sure as hell wasn’t going to be “popping the Decadron when you can!”  Uh…NO.  Luckily, Decadron can also come by IV.

The Benadryl left me feeling a tiny bit tired, a tiny bit loopy, and a whole lot nauseated and shaky and weird.  I was in total misery.  Not knowing what else to do, I took an Ativan (anti-anxiety, anti-nausea, makes me sleepy).  Twenty minutes later, I was…better?  Not great, but I could get through the rest of the treatment.

At this point, I only had two more drugs to go:  The chemo. (Oh, that’s all.  Snort.)

First up was Taxotere.  This chemo drug is a derivative of Taxol.  Ironically, my mom was part of the original Taxol study back in 1996.  That study is a big part of the reason I’m being saved from having to take the chemo drug Adriamycin (aka the “red devil” and super harsh and scary on so many levels.)  So thank you for that, Mom.

But getting Taxotere for the first time is a strange thing.  Because of the possibility of allergic reaction, the nurse sits – and stares – at you for the first 15 min or so.  Apparently, if you are going to have an allergic reaction, it’ll start when the first few drops hit your system.

Here’s why an allergic reaction REALLY sucks:  They don’t necessarily pull you off Taxotere.  They slow it down,  try adding more steroids and more Benadryl.  GOOD LORD.  If ever I could make myself NOT allergic to something, I sure was trying now.  “C’mon body“, I thought.  Pleasepleaseplease.

After about 15 min a bell rang.  “You did great!”  said the nurse.  “No problems!”

I sat there for another 45 minutes, while the Taxotere IV completed.  Whew!

Lastly?  Cytoxan.  Now, if I’m going to get nausea, it’ll be from the Cytoxan.  However, the process of getting Cytoxan is a no big deal, other than the weird, slightly metallic taste in my mouth.

And that was it.  We waved goodbye, smiled at everyone and walked out.  I felt weird and tired and weird and forgetful and weird and wired.  Did I mention weird?  And so many people I’ve met who have gone through my exact same chemo treatment (4 cycles of TC, three weeks apart) have ALL warned me that I should expect NOT to sleep the first night post-chemo.  There’s just too many steroids in your system for sleeping.

Mike was ready to pull an all-nighter with me.  That man is my rock.  However, right after we got home (around 4:30) I crashed.  See?  Too much Benadryl for this sensitive baby.  I woke up around 7ish, only to find that mom was alone with the kids (having a ball) and Mike had actually gone to the school for Parent’s Back to School Night.  Wow.  Talk about feeling completely taken care of.

But now I was restless.  So I headed over to the school, hoping to catch the end of it.  I was actually feeling…fine.  Really!  A little tired, a lot jazzed from the ROIDS…but….fine.  I walked into the classroom to a lot of dropped jaws, which was fun.  “Didn’t you just have…chemo??  Like…today?”  Mike hurries over, “Babe?  Are you sure???”

I was.  So we hung out, had a great conversation with the teacher and a few of the other parents, then Mike and I went for a long walk.  And I’m fine.  It was shocking, really.

By the time we got back to the house, I was starting to feel hungry, and I’m enough of  a “delicate flower” (the nurses’ words, not mine) to realize that hungry = nausea sometimes.  So I had a bowl of my self-invented “cancer cereal”  (cinnamon puffins with rice milk and a boat load of ground ginger sprinkled on top)…and was…fine.  Then we went to sleep.  Sleep!!  I didn’t even need an all-nighter!  (Actually, I’m pretty sure I took an Ativan with my “cancer cereal” so there you go.)  I did wake up at 5AM, but I’ll take that as a win.

This morning, I’m still doing surprisingly well.  I just took my Decadron (steroid) and my Emend (anti-nausea) and will go for a walk, and at some point, head back into the hospital for my Nuelasta shot.  This shot will help boost my white blood cell count back up to normal before my next treatment in three weeks.

So.  I’m feeling pretty tired, but generally OK.  And if I’m going to have nausea, it’ll be today and/or tomorrow.  But so far, so good.  Day 1?  Not as bad as I thought.  And if they let me drop the Benadryl….it’ll be even better? I can only hope.

xoxo

S

Posted in Breast Cancer | 9 Comments

Fight Ballerina, Fight!

Two months ago, my breasts were removed.  Last month I got new ones.  Last week Raines started school.  Tomorrow, I get my first chemo treatment.  And by October I will be bald.

But for the most part, life goes on as normal.  Except when it doesn’t (and I’m guessing tomorrow will fall into the “DOESN’T” category).  It’s like one day I blinked and found myself in someone else’s life.  It’s bewildering and disorienting.  How, exactly, did we get here?  Mike keeps joking that we randomly woke up in a Kafka novel.  I’m guessing that makes me the bug. (Ha!)

But I’m trying to come to terms with being a Cancer Patient (caps intended).  Right now it feels like an identity.  It’s like when you first become a mom and it messes with your head and maybe your sex life goes to shit for a bit or you struggle to define your new relationship roles and make peace with your new body and just REMEMBER WHO YOU ARE DAMMIT through the sleep deprivation and the incessant needs of a new baby?  Yeah.  It’s kinda like that all over again…but without the delicious new baby.  

And frankly, I’m having trouble identifying with most of the breast cancer culture.  The whole warrior woman, I will fight!! rhetoric I find…tiring.  I don’t get it.  I don’t feel like a warrior, I don’t want to race for a cure, I don’t want to wear a pink ribbon (or anything pink for that matter), I just want it all to GO. AWAY.   Warrior?  Snort.  Hardly.  I’m a ballerina, for crying-out-loud!  It’s blush, not pink.  I wear t-shirts that say “Army of Lovers” and if I’m going to kill anything, it will be with kindness.   Like my Mama taught me.

At my last oncology appointment – the one where they help prepare you for your upcoming chemo – I was a flight risk.  I was sitting there in the waiting room, looking at all of the women in their head scarves and earrings and could feel myself start to sweat.  I’m not one of them!!  They are warrior women!  And this is all bullshit!  BULLSHIT!  I looked at Mike.  “Take me away from here” I whispered.  And then they called my name.

I think nurse Robin (who will administer the chemo) could tell I was ready to bolt, because she immediately starting talking about my chance of cure.  Cure, as in no more cancer.  And the thing is…this is it.  My one shot at a cure.  Because if the cancer ever comes back, the discussion won’t be about a cure, it’ll be about maintenance. So warrior woman or no…this has to be my path.

When we got home from that appointment, there was a package waiting for me, sent by a friend.  It contained a card that read, “Cancer Is An Asshole” and a bracelet.  The bracelet was engraved with these words:

Fight Like a Girl

Now this?  This I can do.  Come tomorrow, I’ll be wearing my bracelet and reminding myself to fight like a girl.  (Which, as far as I can tell, will consist mostly of taking my meds on time and keeping myself from BEING CRAZY IN GENERAL.)

We will see.

Posted in Breast Cancer | 8 Comments

First Day of Kindergarten

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Yup.  First day.   He was…well.  I want to quantify his excitement into one of two categories, A – excited or B – not, but he’s so like his dad sometimes that this very well may be his excited face:

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Who am I kidding?  The kid was nervous. We had gone the day before for only an hour.  Raines’ school does an orientation session the day before kindergarten actually starts.  You drop the kids off in their classroom for an hour, listen to the principal, then go back and pick them up.  Easy.

But of course we were late (of course we were) and I was flustered and grouchy so I shooed Mike into the room where the principal was talking and speed-walked Raines down to his class myself.  He was wearing a dirty shirt and ripped up shorts.  As we turned the corner to his class, some kid comes screaming out of there, chased by his Dad and then promptly hauled away somewhere.  Raines shoots me a nervous glance.  I shrug.  And then we walk in.  All the kids are sitting on the rug.  Raines turns to me with fear in his eyes, “sit by me the WHOLE TIME” he hisses.  “Shit, babe.  I can’t!” I whisper back.  At this point, his smiling, loving and awesome teacher (aren’t they all?) comes over to reassure him.  He walks away, flashing me a nervous grin over his shoulder.  “I LOVE YOU!!” I cry out.  All the kids turn to stare at me.  R gives me a wave and nods.  It’s OK.  I leave, then choke out a sob.  By the time I get back upstairs I appear calm.

In summary:   We were late.  R was dirty.  I said ‘shit’ in front of a room full of kindergartners.  Awesome.

Thank god that wasn’t the “real” first day.  Clearly, we needed a do-over.  We needed another first day, one where Raines carefully picks out his outfit, and we have a happy (and on-time) walk to school, and I drop him off and blow kisses and do not swear in front of the children.

Luckily, we walked over with our neighbors.  Raines’ BFF Dorien is in the other kindergarten class, and is super-excited about the whole thing.  This is their ‘awesome pose’.

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We had a happy, on-time arrival….

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….and then the teachers showed up to take him away.

My guy.  My baby.

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“Raines!! How was school??”

“Totally NOT good, Mom.”

“What?  Why?”

“Cause I thought we would play all day and instead we just sat there all day.”

Well…shit.

Posted in Raines - 5 Years Old, School | 3 Comments

The One Where I Shamelessly Brag About Raines

For the last several months, my dining room has looked like this:

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And:

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And:

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It started sometime after Easter.  The Easter Bunny brought this:

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And this book, this wonderful book, inspired Raines to paint nothing but flowers.  Over & over & over again.  

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The book is about a girl and her Grandfather who paint a garden.  R was fascinated seeing how the painting came together step-by-step.

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He became obsessed with painting flowers.  Of all different types. He practiced painting the flowers in the book, he checked out flower books from the library, we looked up pictures of flowers on the internet, he picked flowers outside….

For several weeks, Mike would come home from work to find this:

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I mean really.  I was in heaven.

And then?  Just like that?  It was over.  He was done with flowers.  D-O-N-E.  And promptly returned to drawing missiles.

But it was nice while it lasted.  The paintings have been brightening my dining room for over four(!!) months now.  I’m having trouble taking them down.  But with kindergarten starting next week….it’s time for a clean slate.  I know.

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I’m not ready to let go.

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Posted in Raines - 5 Years Old, School | 3 Comments

My Brave Pax

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Every morning Pax comes in and snuggles me.  Every morning – literally every morning since I returned home from surgery, he lies with me for almost a half hour.  Every morning he wraps his chubby little arms around my neck.  Every morning he strokes my cheek, kisses my face.

And every morning we talk about my “boo-boos”.

“Boo-Boo” he’ll say seriously, looking into my eyes.  And yes, I’ll confirm.  Mummy still hurts a little bit.  “Hap. Eee. Mum?” he’ll ask.  I am now, I say.  With you in my arms?  Always.

He’ll often join me on the couch at the end of the day, too.  Tonight he had a message for me.  He pulled down the front of my shirt, looking at my bandages.  Carefully, so carefully, he touched each one, labeling it “boo-boo”.  Then he kissed them.  He kissed my ugly, bandaged chest.  “Mum” he said seriously.  “Be….bave.  Be.  Bave.”  I looked at him.  Honey, I said.  Are you telling me to be brave?  Pax nods.  He thinks.  “Me” he says.  “Hirt. Nose…..BLUD.”  I nod, remembering his bloody nose from last week.  “Me.  Bave.  Pac.  Bave.”  He points at me.  “Mum.  Bave.”

I will honey.  I’ll be as brave as I can.

Suddenly he hugs me hard.  Fiercely.  Around my neck.  “Zha-zha” he whispers in my ear.  This means gotcha.   “Zha-zha Mum.”

They found a tumor in and amongst the mastectomy tissue.  A real one.  It’s a tiny tumor, but invasive cancer nonetheless.  I don’t yet know what my treatment plan will be, but we are meeting with the oncologist Monday.  I’m trying – for so many reasons – to be brave.

Posted in Breast Cancer, LoveyDovey, Pax - 2 Years, Talking | 9 Comments