Chapter 5: Roll-ups

Here is what cancer teaches parents with youngsters:  That our children are not actually our children, and that we were never meant to fill all the holes meant for grace, hope, love, service, prayer, hiking, and chocolate.

Whose are they then?  Because entrusting them to a God who allows/causes/whatevers cancer, war, rape, etc. feels like leaving them alone with a babysitter who may or may not identify as a psychopath.

If God is in the fritos and the barf, in the grapefruit, the gauze, the lanyards, and the redwoods, does that mean God hovers over and oozes out of the death of a young parent?  My friend Chrissy will tell you yes, God is there too.  Her daddy died of ALS when she was seven, leaving a wife and six children behind.

Fuck.  That. Shit.

Once, I dreamt of God, a Lion, circling the canvas tent my family and I huddled in like meerkats  keeping out the cold.  All the jungle noises frightened us, but none more than that scary-ass roar.

He’s coming for us.  We’re done.  Aslan isn’t a Good Lion after all—Aslan is actually Scar.

The roaring, strangely, never crept closer.  After hours of listening to the growly intimidations I peeked out.  The lion wasn’t stalking my family, my dying sister, or me.  She was protecting, keeping all the hyenas and all the jungle away.

That’s a God I can understand:  A fierce protector of the holy clay called Good.  I’m okay with scary and hard, because God always ends up swooping in the end.

Hard becomes Good after Love roars away all the fear & death.  When we peek out through the worn canvas structures we built and see the safety and freedom and life we’ve been provided, that’s when we start to say Thank You instead of How Dare You?

Then we dance.  The jungle howling never stops, but neither does the dancing.  I can get behind a God who dances.

***

By eighteen months, Lucy developed an affinity for albacore tuna with mayo and minced celery, a combo etched into my own tastebuds by my Grandma Jo.  Tuna wrapped in a flour tortilla with melted cheddar cheese, shredded carrots, julienned bell peppers, and tomato cubes.  Yum.

Don’t forget this Claire.  In fact, write this down.  Because when you die, David’s new wife will need to know Lucy’s favorite lunch.

So that’s what I did, keeping a journal filled with all her quirks served as a cheat sheet for any caregiver who might inherit my firstborn after my death.

8.31.11 “You love sucking on wet rags in the hot weather.  It’s weird and little gross.”

1.17.12 “You are a lounger, Sweetie.  Legs always up and spread eagle. I get it.”

10.21.12 “You hate cuckoo clocks, a lot.”

12.9.12 “You love dancing to Sesame Street music.”

Maybe I loved her so much that I wanted to remember everything, all her inner workings.  Or maybe my fear wanted to spare her from the pain of being unheard & unknown, two subjects in which I majored.  There’s a photo of us, I’m masked and she is new and we are waiting for an infusion in a waiting room.  There was so much I wanted to say, but the mask kept me quiet.  No words could unscramble the sloppy mess that cancer causes in a young parent’s heart.

When I die, who will Love my child?

She is only three-months-old and can’t communicate that raspberries give her diarrhea, I knew I should’ve taught her sign language.  Looking at trees calms her down, I’ll write that in red.  DO NOT OPEN THE DOOR ON THAT TREE IN THAT IPAD GAME, she will cry the saddest baby tears when that creepy bunny pops out.   All these moving parts, these pieces wrapped up inside her being, they need naming so she stays healthy and smiling.

Claire, your kids love dance parties.  Look!  The Lion DJ is safe, and starting to set-up the turntables!

Her journal became an easily-digestible program that anyone could download.  And it’s hard to acknowledge now, but that’s what I needed her to be, easy and digestible, because I was so flimsy.  I was convinced that any other woman could serve and love her better than my bald, sorry ass.  Please, take my girl, this journal I strapped around her neck will help.  Here’s my husband, too.

I stopped writing in the journals when I realized that no amount of ink would bring me back. Remembering Chrissy and all the other stories I’d heard about the horrible blessing of losing a parent helped me settle into a fragile peace.  One I still access and try to maintain today.

Making sense of the Goodhardgoodness is above my pay grade, Anne Lamott reminds me.

Instead of continuing to scratch the soil out of own grave with my fountain pen, I decided to try living for a change.  Because now I wasn’t dying; I was one year, two years, three years into remission– Alive!  (mostly…)

And ready to trust that the Babysitter could make a roll-up, too, maybe even tastier than mine.

Probably not though.

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Chapter 6: Miracles (Rae)

I’m holding my miracle, Rae.  Maybe the elation is because I can breathe again, or maybe it’s because she doesn’t have the third arm we feared she could.  This infant is proof that we all, on some level, crave Life. My baby, the one all saucy and soft, has reminded me of a Love I thought left me on the eleventh floor.

At my staging appointment sixteen months earlier a new hematologist, who would head up my BMT, heard rumors about a twenty-two-year-old coming in with a newborn.  His team rightfully assumed that this youthful beauty would appreciate an appointment with University of Colorado’s Oncofertility team.

That’s a thing?  I feel like the prefixes ‘onco’ and ‘fert’ only belong together in a joke.

Right after he manifested my nightmare, yes you’ll need a transplant, I was directed to the floor and wing where all the gutted women go.

How many miscarriages?  How many folistem injections?  How many sperm collections and tubes of ultrasound gloop?  Tissue boxes peppered every flat, laminated surface.

“You’ll never naturally reproduce again.”

“Bone marrow transplants kill all the eggs in your ovaries, because they are meant to kill you.”

“At least you’ll never menstruate again.”

Don’t say that ever again, to any woman, ever.

So I’m done?  That’s it?  No more babies for Claire?

Later at home David and I decide that we enjoy Lucy enough & would like to give her a sibling someday.  We call our nurse practitioner to green-light the (very expensive) treatment.  Two weeks: in two weeks we would collect as many eggs to fertilize as possible.  After that they would start chemo and rob my fertility.

“I have cancer,”  I inform my OB-GYN, the woman who, six weeks prior, delivered my baby.

She tears up.  “You’re so young. Is Lucy okay?”

“Yep, she is great.  I had to stop breastfeeding because the radiation in the PET scans can’t be consumed by babies.  And they said I’d start chemo in two weeks, so I wanted to ween her off as soon as possible.  My boobs hurt, but she loves the formula.”

Also, we are now a robot family now.  Here is my metal cervix for you check.

“Okay, let me know how I can help.  University of Colorado Hospital has an incredible oncofertility team; you’re in great hands.”

You mean their great hands are in me.

With pregnancy hormones still racing around inside, David did the job of a true hero by injecting more of them into my ass cheek, inducing the ovulation of the century.  At night after we put Lucy down David and I started the routine of flushing my trilumen port before confusing my body with fertility drugs.  Wait, we just had a baby, why the hell are we producing all these eggs again?!

Goodnight mouse…goodnight house…goodnight to the old lady whispering hush…Goodnight room…goodnight moon…zzzzz

First the port: sterilize with the alcohol wipes whose smell still makes me rage-y, inject saline into all three exposed IV lines dangling out of my chest, re-sterlize, cap off so my insides don’t drip out.

Then switch gears from cleaning a dying wife’s hardware to trying to help harvest life from the dying wife.

Every night.

Fourteen days later, all the ripe, plump eggs trapped in my healing uterus were ready for harvesting.

This is my last chance.

Any babies I hope to meet will leave my body right now.  How is a woman supposed to grieve all of this?  There’s a two-month-old at home, I am still physically recovering from her birth.  There’s a husband here next to me who doesn’t know if one day these embryos will be the only thing left of me.  Inside, tumors are blocking my esophagus and impinging on my pulmonary structures.

No, God doesn’t exist here.  Not in this room.  This is where women get their insides removed.  This God isn’t one of redemption and restoration and love.  This is a God of barrenness, death, saline, and sharp metal utensils.

The doctor couldn’t believe it:  thirty-six eggs harvested.

“If you weren’t about to have chemo I would encourage you to become an egg donor.  Usually we see twenty—tops.”

Don’t say that ever again.

Then, eighteen beautiful eggs fertilized.  Great, now what?

Now chemo.  See Fritos.

***

Six months after my discharge from the BMT, I woke up to pee in the middle of the night.  Which, for someone with a camel bladder, only happened once before—during my pregnancy with Lucy.

This is weird, said the girl still growing back eyelashes.

A PET scan was scheduled to see if remission still wanted me.  They keep those signs on the walls, the ones with babies and a red line through them, because these machines can ruin a fetus.  At least that’s what the waivers say.

You guys, I feel pregnant, I told my nurses and the techs.

And then they laughed nice laughs, because nobody (literally no body) can create and sustain life six months after dying, six months after a transplant.

They gutted me, they took apart my insides, and froze the pieces.  They said I was empty.  God was on board too!  You are now Barren Claire, just like Barren Rachel and Barren Sarah and the barren survivors of Hiroshima.

At the time of that scan, the one where they inject you with radioactive dye and tell you not to hold your baby for twenty-four hours, Rae was just a sesame seed growing inside me.  Three weeks gestation, but a thousand years of stubborn.

The meds?  How will she survive the meds?  She survived the meds.

The stress?  How will she thrive if my body is still struggling to live?  Doctors warned she would arrive early with low body weight.  She did arrive early, but that’s because they feared her twenty-four-inch-long and 11lbs 4oz frame would murder my lower half.

The scan?  What did it do to her body?  Her fingers and brain?  She survived the scan unscathed, as far as we know.  (But David and I are still waiting for spider webs to start shooting out of her wrists, because she is huge and taught herself Spanish.)

Rae is an “anomaly,” and she made my medical records very valuable.

Rae is a miracle.  But doctors don’t like that word.

And I am so thankful to have her.  Thankful for the hours waiting in that wing, on that floor, surrounded by my empty & aching sisters and brothers, because it’s a pain I can pray for now.

I’m thankful for the gutting, because I think maybe it made room for the giant baby who God needed alive.

She loves the color red, and rainbows blow her brains apart.  I pray that her turquoise marble eyes and perfect proportions don’t cause too much trouble for the more pious members of her future youth group.  She dances funky, and eats too fast, and stays a little too long on the sensitive side sometimes, but she is unwavering in her devotion to her friends and family.  Her affection, care, and presence help to heal those around her.

She reminds me so much of Ellen.

Rae, my little lamb, further bolstered my belief in a Good, hard, wild, and loving Shepherd, who dabbles in miracles & obstetrics every once in a while.

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