Chapter 2: Grapefruit

 

Some kids throw up in the car because the irregular motion messes with their bodies; and then there are the small number of adolescents who have Glioblastoma Multiformes (GBMs) the size of grapefruits attached to their brain stems.  They throw up because pediatric brain cancer has ravaged their cerebral matter, and so you keep vomit-holding vessels in the old, wood-paneled, white Jeep and then in the blue, rectangle Astro Van.

It was the size of a grapefruit—she was five.  She rejoiced after the appointment where they told us she had six months to live, because now she wasn’t crazy.  Now the migraines and vomiting and mood swings made sense and she became the skinny, freckled captain of her own seas again.

At the market, when I pass grapefruits, I think no, there’s no way that fit in Ellen’s head.  And in winter, when I slice one of the those sherbet orbs in half, the smell and tang hits my nose, causing a flood of saliva to swell in my mouth.  Why do I enjoy this awful bitterness?

Because they’re just sweet enough, especially with a little time to ripen and a pinch of sugar.

That tumor uprooted our lives, it saved us too.  Sharp, acidic, totally unpalatable, with a heap of pain—and yet—holy, eternal, good.  No, Good with a capital G, like flossing or therapy.  The Romans 8:28 kind of Good.

Goodhardgood.

I don’t know of a better way to find out that life is worth living than through the crucible of cancer, or any chronic illness (addiction included).  We are the luckiest, also the neediest, and the baldest.  Very needy and hairless and lucky.

A trip to Bruin Woods, UCLA’s alumni family retreat center in Lake Arrowhead, was scheduled for the week of July fourth, but her Independence Day brain surgery conflicted with our fishing plans.

“If we reduce the size of the mass and blast her with radiation and chemotherapy she could make it another year, maybe.”  Doctors consoled.

Yes, but I had plans to go paint pottery and weave lanyards on a lake surrounded by California Pines. I’d prefer not to spend my summer vacation waiting to hear if my sister survived surgery or not.

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Chapter 3: Gatorade

At the age of nineteen I received my very own oncologist.

The pretty story I like to tell people goes something like this:  My freshman year at the School of the Art Institute of Chicago was stressful and I returned home to take a few summer classes at Moorpark Community College to figure out next steps.

But the truth erases all possibility of blowing back to the Windy City (don’t tell my dad, please) because there was an abusive relationship, and co-dependecy galore, and stress, and weather, and both a Green Peace solicitor and an H&M on every corner.  Lots of ands.

“Dude, look at this lump.”  I yelled down the hall to my best friend Sarah, whose house I was crashing until I felt a little less disheveled.  A large mass just above my left collarbone pillowed up almost overnight.

In a few days I would have a yearly physical with our family doctor, I’ll ask about it then.

Blood pressure—low, as always, Thanks God.  Weight and BMI—high, as always, Thanks God.  And butter.  I’m walking out the exam room door, I don’t want to ask about the lump because deep down I know what masses mean.

“Hey, I totally forgot, could you take a look at this thing on my neck?”  I point to the tumor Sarah later named Timmy.  His eyes widen with each step toward my awkward, fearful, limitless teenage body.

“Claire, we need to get you an X-ray tonight.”

Why?  I didn’t break anything.  I know that tone, I used to hear it in UCLA exam rooms all the time.  Cancer couldn’t be in my cards, too.  Could it?

“With your family history, we need to get the ball rolling.”

My appointment was his last one of the day & it lasted longer than expected, the lights in the long hallway flickered off as I raced out the door.  Fifteen minutes until my appointment at the imaging place off Hampden Ave.  Late August in the Santa Monica mountains is brown and I remember how cripsy it all looked speeding past my window.  French fries pressed into the soil, sea salt and sage wafting through the open windows and wrecking my hair.

This can’t be happening…I want to go home, wherever that is…

X-ray.  Check.

CT scan.  Check.

PET CT scan.  Check.

August 28th, 2007.  “You have Stage III Hodgkins Lymphoma…Great odds…twelve rounds of chemo…not a GBM…”  All his words sat scrambled in a cold pan inside my brain bits.  Nothing registered, nothing moved, nothing bubbled or browned or became digestible.

“Will I lose my hair?”

“Duh!”  Jk.  He didn’t say that.

“Yes.”  He nodded.

I remember reaching for the tissues at this point.

“My eyelashes?”

More nodding.

“Eyebrows?”

“Most people lose everything with this type of chemotherapy.”

You ask most any Millennial woman what part of her face she values and protects like a new iPhone and she will reply: eyebrows.  It was this thought, the one of my eyebrows jumping ship, that brought the tissues to my inner eyes, where they dabbed away at the pride and vanity my quest for Kardashian brows fueled.  Why God?

Within a week I had a port-a-cath installed in the lining of my chest.  Do you know how much attention nineteen-year-olds with chemo ports receive?  ‘Bout time, bitches!  Now fetch me that remote, and a Fresca. Grab an oxy, too, will you?  

Timmy swept in like a croissant in shining armor (he must’ve known my plans), because now I could blame the C-word instead of the boy and the snow for my permanent Midwestern exodus.  Thanks, God.

Young, punk-ass baldies wearing space-age black Chanels, rolling in hot, blaring Timbaland and Justin Timberlake out the open windows of Honda Elements are a few things older people hobbling with helpers to the curb of their infusion center DO NOT appreciate.  Just a heads up.

And to be fair, I never actually lost all my hair the first time I had cancer, which made Sarah’s dad laugh.

Because months earlier she and I sat in the bathroom we shared and laugh-cried as she buzzed away all my chestnut glory, forty years too soon.  When middle age, or older age people complain about cancer, hair loss, their fears of dying, I struggle to find the grace and kindness one would expect to conjure up.

Did they tell you at age nineteen you could lose your fertility?  What about college?  Could you attend college uninterrupted instead of partaking of chemical poison?  You lost your hair, at the age of sixty-five?  How do you think it feels as a teenage girl, in Southern California!?  Cry me a… I mean—I know.  It sucks, and I am sorry.  Hug.

Inhale.

Exhale.

Ellen’s faith in a Goodhardgood God never wavered, no wind or needle was strong enough to bend her Joy or break her smile for long, so I knew combating cancer with a deep, immutable peace could happen.

Raise your hand if you have a “life verse.”  If you’re a recovering Evangelical like I am, then you have it tattooed on your inner wrist or your heart.  Since the fifth grade Romans 8.28 alone has helped quiet the terror of my alone moments.  “…That’s why we can be so sure that every detail in our lives of Love for God is worked into something good.”  Good.

The Red Devil.  That’s what they call Doxorubicin, a chemotherapy drug that nurses administer with great care, lest it melt their skin off.

“So if this touches flesh it will burn right through?”  I asked.

“Yes,” Patti nodded, wearing her white, sealed, sanitary tent.

“Good to know.”  I sunk down into the oxblood leather chair and imagined what the molten insides of my forearms and abdomen looked like.  Daddy, not caring so much about Chicago anymore, sat across from me, watching his a second daughter receive chemotherapy.

I don’t know if he’s said it out loud yet, so I will for him:  Fuck you, God.

The Red Devil looks exactly like red Gatorade, and makes one’s piss reek for days. Today, when whiffs bounce around the back seats of my car after soccer practice I’m unsure whether to  verbally abuse the child drinking it, curl up into a ball on the side of the road, or breathe deeply.

Romans 8.28.  I remember this.

Scribbling down the date on my journal page after that long day—the one where I learned of my eyebrow’s fate— I remember: All things work for Good.

If all the other angry, true, beautiful words on that page blew away—8.28.07 would still remain, etched and established in the upper left corner.  An inky ebenezer gently reminding me again that God wastes nothing.  So this Hodgkins ravaging my chest and pelvis is…Good?  Ellen believed it, so can I.

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Chapter 4: Avocado

“We got it down to an avocado,” her surgeon exhaled.

It was a surprise to discover that, underneath the gauze turban, her head looked like a clydesdale’s welcome mat, a giant horseshoe incised along the side of her scalp.

I remember the floppy red sunflower diaper bag Mama carried resting on the foot of the hospital bed because—on top of having a terminally ill member of our family— we also had an infant, my sister Fiona (the fairest of us all).  Mama’s breastmilk turned sour after Ellen’s diagnosis, and Fi stopped nursing.

I can’t believe that a God of Love plays some part in all of this.

Sometimes I slice off the top half of the room and float down from above.  We’re all gonna make it, guys.  We’re all gonna make it I whisper to us, still stuck in the trenches.  

In our hospital room I can see my mom struggling to release not only the dying daughter, but the not-nursing-newborn, too.  And an oldest daughter, me, raging, manipulative, lonely, and terrified.  Over there– my dad–divorced from my mom for two years now, afraid to go home to an empty apartment knowing his heart sleeps here.

Somewhere hidden under all that bloody gauze, under the crusty tears and the medical bills, something Good exists.

I look at Mama and Daddy and I want to tell them I see them, and I forgive them, and they didn’t fuck it all up.

I walk over to the blue-eyed beauty sucking her fist in the stroller and tell her she is perfect, I will never stop loving you. Not even when she breaks my nose in three years.

I look at my other sister smiling in the giant hospital bed with her horsey head.  Or maybe she is riding her IV pole down the hall?   “Thank you,” I whisper, teary and full.  She doesn’t know yet that Bruin Woods awaits because God miraculously heals her; or that she sings “Somewhere Over The Rainbow” at the talent show—and nails it.

Ellen doesn’t know she is a miracle or a prophet, yet.

***

Since I’m an honest woman, I will confess that chopping up the onions and sweet potatoes on my kitchen counter seems mighty tempting right now.  It’s not fun recounting the first of many post-surgical stays at the UCLA pediatric neuro-oncology ward.  I hate thinking about the staples in her head, until I smile & remember my irrational fear of them jumping out of her flesh in the night and sneaking into mine while we slept side-by-side.

I don’t want this life, this Gift.  Until I remember that I do.

Who wants to open up a care package wrapped in razor blades?  No thanks, I prefer something a little pulpier, velvety soft.  Ellen rarely saw the sharp.  Instead she saw God, a caring force pulling her deeper and deeper into peace, acceptance, and joy.  Now I understand, because I too have spent too many days trapped inside the walls of similar rooms.

My bird’s eye view of us helps me see this offering, one that I mistakenly thought God wrapped in razors and thumb tacks, as something so Loving now.

Would it be weird to say Thanks?

Ohhh, these aren’t razors…that’s the velvet—the sustaining, green, omega-3 Goodness.  That thing we all want, the closeness with our core, our Love, our Purpose and Place is never more visible and attainable and real than inside the gift we are most afraid to slice open.  If it’s possible in the post-op room of a dying 5-year-old, then it’s surely possible every and anywhere.

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