DragonSlayers

Lauren and Piper: DragonSlayers in Slippas

Beauty radiates.

Lauren and Todd

This shows that playful side I love so much.

Lauren and Theo

Yes, typical siblings.

Quiet moments

With my favorite girl.

Magic Wands and Squeaky Wheels

Did you know there are angels among us?  That’s right--in disguise, magic wands in hand.  Last year I was honored to meet one of those wand wielding angels by way of her introduction as Lauren’s Seattle-area “Wish Granter” for the Make-A-Wish organization.

If you’re not familiar with Make-A-Wish, let me nutshell it this way: The organization bestows smiles to young people who need it most.  M-A-W is the largest wish granting organization of its kind.  From their website: "Since 1980, the Make-A-Wish Foundation® has given hope, strength and joy to children with life-threatening medical conditions."  Wish Granters operate on behalf of the company as fairy godmothers and godfathers to critically ill children and kids who have fought a life-threatening illness.

And although we’re back home in Hawaii, Lauren’s first Wish Granter continues to stretch that sparkly wand across the waves to spread her special kindness.  Audrey doesn’t need to do this, but she does anyway.  You see, when we moved back to Hawaii, Lauren was transferred from Washington to Hawaii Make-A-Wish.  Not even angels can escape bureaucratic red tape.
   
A few days ago I received a short but sweet “just checking in” email from our Seattle M-A-W Wish Granter.  She asked about Lauren and whether she had picked her wish yet.  She signed it, “With love to you all.”  After reading the email twice, I closed down my computer.  I sat on the back lanai of my mother's house, taking sunshine into my body like oxygen.  When I was noticed an ever increasing tightness in my chest, I focused on my breath, as my acupuncturist has suggested.  I listened to the noisy community of birds who have made the garden oasis on Hoopuni Street a favorite gathering spot.  I tried not to think about Audrey and Make-A-Wish.

Don’t get me wrong, it wasn’t Audrey.  It was me, stewing a simmering pot of pissed off on the back burner of my conscientiousness.  Anger.  Sadness.  Frustration.  I avoided Audrey’s email for three whole hours before I felt like my head would explode from the pressure.  And so, I responded.  Please forgive my weakness, friend, wherever you are reading this.  How can I fully express the feebleness of my heart?  I exposed the wounded, self-pitying, toddler-tantrumming bits of my spirit via email.  What kind of person does that?

My embarrassing response to the lovely, fairy-dust-spreading Audrey:

Miss you, Audrey.  Miss you.

It appears that we've moved to Make-A-Wish wasteland.  Nothing here. No presence at all.  Well, I guess that isn't "technically" true: We get sporatic bulk flyers that tease us with Oahu-only events.  :(

I think it makes Lauren more than a little sad. MY wish, Audrey, is that we could have done her wish there.  You guys took such good and kind care of us.  *sigh

You know, I just had a feeling this would happen. If you don't live on Oahu in Hawaii, you are pretty much invisible.  Doesn't matter that you're a girl who survived cancer or not.  Completely invisible.

Makes me want to cry.

--Piper
Mom to Warrior Princess Lauren


I hit send before I could chicken out, then checked my inbox.  There was already a response.  Impossible!  Actually, it was a follow-up to her original email.  How odd that somewhere in the greater Seattle area, Audrey had been thinking of us at the same time I was thinking of her.  What are the chances? I wondered.  With this question in mind, I felt compelled to send another email, if nothing but an attempt to better share my feelings.

Hi Audrey,

I'm sorry that I'm venting to you. I'm just sad and frustrated.  This Oahu-centric treatment isn't limited to Make-A-Wish.  It's just that I watched Lauren struggle last year.  To say she fought (and continue to fight - she still has spots on her lungs) for her life with that golden wish in mind... There were days and weeks and months that M-A-W was the thing that got her through. When she was too weak from the surgeries or chemo or infections, when she felt her lowest, we'd talk about her wish. Together we would close our eyes and imagine the rides at Disney World. I would describe scenes as vividly as I could, from memory, to enhance our visualizations: swash-bucklers and stashes of treasure in Pirates of the Caribbean, the musical wonder of the "Laughing Place" at Splash Mountain, an exhilarating zip through a universe of stars at Space Mountain.  We spent hours and hours imagining her wish.  It was her safe place to go when everything else fell apart.  And you folks made her feel special, kept that wish on a front burner, visited us, and brought smile to her face.

And I don't think I ever expressed to you how much I appreciated you both.  Please let me do that now.  Thank you!

So, here's one of the flyers we have received from M-A-W Hawaii.  No greeting, no context. And you know what? I don't even tell Lauren that these come.  It's kinda like: "Hey, Lauren!  Look at this really cool thing we can't do!  Aren't those M-A-W families on Oahu lucky?"

Love, light, and aloha from our family to yours,

Piper

Forwarded with my email to Audrey was an electronic flyer I had received about an Oahu-only event.  Truth be told: I felt lighter after sending the email.  The gnawing irritation had dissipated somewhat.  There seemed to be more room in my chest.  Physically, I felt lighter. The Make-A-Wish confessional diet.    

About 20 minutes later, my phone rang.  It was a Hawaii number.  In fact, the caller was a representative from Make-A-Wish Hawaii.  Greetings.  Introductions.  A little bit about the M-A-W program in Hawaii.  Apologies.  You see, Todd had contacted the organization upon our arrival back home.  His call coincided with an annual fundraiser.  Busy times. We’ll get back to you.  I sent an email inquiry in January with Lauren’s information, our address, and a request for a meeting.  We were placed on an email distribution list and started to receive exciting notices for Oahu-only events.  Grumble, grumble, stirring that pot of pissed off Momcologist stew.

Now this: We’re finally setting up a meeting with the Hawaii folks to talk about Lauren’s wish.  Audrey also sent a reply, a short little love note along with suggestions for fun things we might do for the next scan visit in January.  With her magic wand, Audrey includes us as extended members of the Seattle Wish Family:

You are forever in our hearts.  Let’s see if I can make something more tangible happen. 

Hugs to the Warrior Mom ,
A.

It’s not my intention to bash any part of the Make-A-Wish organization. And the “Pity Party, Table for One” emails I sent Audrey are something I wanted to make public, awkward and humiliating as they are.  I’m willing to be an ass because I know Lauren wouldn’t do it for herself.  Please don't think less of me for it.  As her mother and advocate, I’ll take that bullet for her again and again.  I know her dad would do the same.  Something about squeaky wheels.

 

Selective Memory

I remember writing that my daughter was NED (no evidence of disease) and that my husband kindly, gently corrected me.  The thing is, Lauren does have spots on her lungs, which is a type of evidence.  So then, what is she?  SED?  Some evidence of disease? UED?  Unchanged evidence?  The spots on her lungs have not changed much in the 6 months we’ve known about them.  Is this a good thing?  To me it doesn’t feel good.  It feels like an uncomfortable spot in my gut. It feels like good news that doesn’t feel 100% sincere. And now that scans are over and we’ve been given as close to a “thumbs up” as we’re likely to get, it feels like relaxation.  Kind of.

This feeling of tension, this knot that refuses to unwind no matter how much or how often I contort myself, is like trying to relax in a room with a ticking bomb.  But the timer on this bomb is hidden from me.  We don’t know if or when it will go off.  We try not to think about it.  Ha!

I remember writing NED on this blog.  I remember a feeling of elation and relief mixed with sadness about our friends who didn’t receive elation-type news.  I remember thinking I heard NED, but really I didn’t.  I remember hearing what I wanted to hear.  

Cookies and Community

"Keep reading" teaser from Yummy Cafe

A Good Fortune... but first the muck.

Yesterday was "scan day," a terrifying, post-treatment variant of  what we lovingly refer to in our house as Torture Tuesday.  Lauren was diagnosed with bone cancer, Ewing's Sarcoma in her left distal femur.  In mid-July, 2011, we learned that she had a tumor inside her leg, right in the thigh bone, a little north of her knee.  We flew to Oahu where the initial diagnosis was confirmed.  Upon hearing that the one specialist who might best help our daughter was on vacation for three weeks, my daughter and I boarded a plane for Seattle Children's Hospital, not knowing when we would return to the State of Hawaii.  My husband and son returned to the Big Island, packed up our house with the help of awesome friends and family, and joined us on the mainland to battle the Big C.  We wanted to be together as a family unit.


What followed still floors me.  Truly.  Catastrophic illness knocks on your door with an invitation for a club no one wants to join.  During your tenure, patients, family members, friends, and support folks are initiated by fire.  We learn the secret handshakes, a new language, and prepare for the best.  Our family was blessed to get into the Ronald McDonald House, just blocks from Seattle Children's Hospital.  Initially we thought we might bunk with my husband's brother and his family.  A grand plan to save costs and be with our people.  Our medical team informed us that we'd need to find new people to bunk with because Lauren would need to be near the hospital and couldn't be around little tykes in daycare, as adorable as they might be.  Any parent knows, after all, that little people are germ factories. They can't help but be; it's their job: Expose self to germs, bacteria, viruses, and build immunity.  The problem was that my daughter would have a lowered immune system and need to be protected from those same germs, bacteria, and viruses.  So, the Seldens moved to The Clown House and discovered there, along with folks we met at the hospital and elsewhere, a wonderful community.  These folks helped us endure a year of surgeries, chemo, fevers, life-threatening infections, and more.  How could there possibly be more, you might ask?  Imagine the worst and add a cherry.

Back to yesterday.

While dragging from appointment to appointment, I spot a familiar face.  We're up at the Hematology/Oncology clinic and give each other a wave and warm smile.  I tell her with my eyes, "Head up to you, Mama.  Love, love, love to you and your family today."  She sends me the same message.  In that moment we are connected, community.  She's part of my new tribe, new people.  But this exchange is extraordinary because I know this woman mostly online, from a social media support group on FaceBook.  Or is it extraordinary?  It's shocking to me how much of our lives are lived online.  If we're part of social media, we share statuses; give a "thumbs up" to good news; "like" and  <3 and emoticon things; comment, rant, and rave about others.  We can send and receive email; read, write, and/or comment on blogs; and let the world at large know what's happening in the tiniest corners of our lives.  We connect, but only if we choose to do so and only to the extent we want.


Later, I posted to my friend's FB page: "Nice seeing you (but too briefly).  Hope you got my mental hug as we walked past."  She did, bemoaning the wildness of her day.  I understood because we'd experienced a similar kind of crazy--a full day affair of Torture Tuesday.  Orthopedic Clinic and Scan Day for bone cancer kids and their loved ones: labs, scans, more scans, tests, PT appointments, "drive by" hellos from families and staff (the best part!), fear, anxiety, stress, upset stomachs, gnashing of teeth, and then all the waiting for appointments.  Mental hugs on these kinds of days--those stressful, awful days when the world seems to hold its breath for news and results--are golden.  My friend's child has a different kind of cancer, so hers is a different full day.  Then again, any day spent with a loved one who is chronically ill and suffering is torture.  100% pure, unadulterated, and naked… torture.  Writing about it helps.  Taking care of myself helps.  And being open to a community of golden moment smilers, huggers, and tear-wipers helps.        

In a week or so, I will fly to Boulder Colorado to present a paper at an academic conference.  The panel I chair explores myriad topics relating to life writing—writing about the self: autobiography, biography, blogs, exhibitions, diaries, disability narratives, life history, memoir, oral history, quilts, social networks, expression through visual art, writing for and about vulnerable subjects, and more.  How delightful it is that my life's work in academia and my passion for writing have dovetailed!  I just wish the circumstances weren't dire.
Life writing, like parenting a child with a serious illness or disability, is living in the extreme.  It's difficult, uncomfortable, revealing work at times.  Joyful at others.  On the schizophrenic tilt-a-whirl of emotions, there is one constant: Life writing is high-stakes stuff if the writing is honest. You have to get naked and dive in.  And if you write with the intent that others will read your work, it's a public disrobing.

Certain questions tickle my brain: How much truth will we share?  To whom will we share it? And what will be left on the edit room floor?  Suleika Jaouad’s column “Life, Interrupted,” in The New York Times examines some of these topics in a life lived out loud and online.  The spunky 23-year-old writer from Saratoga Springs, N.Y. chronicles her private-turned-public experience with cancer.  In “Posting our Cancer on Facebook” Jaouad writes: “In the world of social media, we are our own self-portraitists. Our digital identity is doctored to show the best version of our lives. (Maybe a more apt name for Facebook would have been “Best Face” book.) It’s not a new observation to point out the disparities between our online identities and our real selves, but for me, as a cancer patient, that gap has never felt larger.” I too have lived a life out loud, especially after my daughter was diagnosed with cancer.  A good deal of my writing now expands on the tensions of online living as a method of defining illness for the self and others.  Those of us who do it use personal and community FaceBook pages, as well as social network sites like CaringBridge and Cole’s Pages. And blogs like this one.  It's a way to connect.      

All smiles at Yummy Cafe!

Yesterday I lived openly and online.  My daughter had her 6 month post-treatment scans and I posted the good news with lots of pictures.  We received the happy phone call during lunch from our dedicated and thoughtful nurse practitioner, "Everything looks good!"  We finished our meal at our favorite Chinese restaurant and toasted fortune cookies.  Lauren laughed out loud, then read the tiny strip of paper pulled from the broken cookie halves. "You will pass a difficult test."  Ha!  My husband called this the second, corroborating opinion.


We returned to the hospital to complete one last test, a bone scan showing growth around the donor graft in Lauren's leg.  But while my daughter received the much hoped for "all clear" NED (no evidence of disease), her best friend did not.  As much as we hope and bargain and pray for the best for our own children, we do the same for the friends who struggle with us.  Crushing news.

Cancer is a devastating, insidious disease.  As I've said to friends and family, it makes a ruinous mess of lives and futures.  But the people we meet along the way--the people we stand with, stand in memory of, and the people we help support when they can't physically (or emotionally) stand on their own--these people are our community.

**  To the members of my golden smile community, I thank you and continue to stand with you through it all.  Thick and thin.  

Learning How Not to Drown

My son is taking 'ocean swimming' as an 8th grade elective. We're in the car today and I ask how his class is going.  He replies: "Well, we swim. He's teaching us how to do the strokes, not just how not to drown."

In my mind, I picture the “How Not to Drown” lesson plan and what it would include.  How do you teach someone not to drown?  Perhaps Mr. Ebersole could give me a tutorial because living in the wake of a cancer diagnosis feels too much like drowning.  Sometimes I get so busy trying to balance my life—home, hearth, and all: husband, kids, pets, work, school, writing, reading, diet, health, the-list-goes-on-ad-nauseam—that I forget to paddle my arms, forget to kick my legs.  I forget that what I’m really doing is treading water.

Later, my mom and I were chatting.  We were driving to lunch and she was giving me directions from the passenger seat because, true confession, although I have lived in Hilo over nine years, I still get lost.  Put a paper bag over my head, spin me around a few times, remove the bag, and I’d be lost on most any street.  Guaranteed.  I’m just not directional.  So, I ask her, quite out of the blue, what she thinks about antidepressants.  “For you?” she asked.  I didn’t answer.  “Well, how could you not be depressed after the year you’ve had?”  She’s got a point, but it’s more than just this last year’s stroll through Cancer hell.  Apparently, when someone upstairs was handing out health-related trouble, I gave it my best Oliver and asked for some more:  (http://www.youtube.com/watch?v=sZrgxHvNNUc).  Daughter with cancer—check.  Son with autism—check.  Me and my own bad self with Lupus—check, check.  For practical purposes, let it be known throughout the land that my husband is strictly forbidden to take ill for any reason whatsoever.

So I’m mulling over a decision: to tango or not with the happy pills.  Because, really?  Depression hurts (my TV-addicted brain adds: “Cymbalta can help!”).  It does hurt.  How do we get through the blues?  How do we live through black dog days?  Depression, the real-deal medically diagnosed kind, runs in my family.  Is it that kind, I wonder?   I’m all for better living through pharmaceuticals, but I don’t want to dampen the feeling part of me.  That’s not quite true.  I want to dampen the crushing pain, but I don’t want a Halcion haze.  I’m not entirely sure how I feel about becoming a part of the Sedation Nation.  To be clear, this is a discussion each person should have with his or her own doctor.  I’m not anti-drug by any means, especially when I know anti-depressants help millions of people.  Maybe happy pills are a type of life saver, a flotation device for overwhelmed, water treaders like me.  Not sure yet.

It amazes me, still, how cancer shreds every aspect of a life.  At least that’s been my experience.  Todd and I were lying in bed a few days ago, both stirring and uneasy.  It was too early, not even the Myna birds were up.  Black shadows fold and flow, blushing the air around us.  Objects take shape.  Our library-esque bookcases, over-stacked with books read and to read, change color: black becomes eggplant, then violet, then a brilliant bloom of orchid.  In the ever pinking room, Todd sighs: “You know, a year ago last summer our life was just TOO perfect.”  “And now look,” I answer. “What a ruinous mess.”  Hey, thanks Cancer!

Cancer takes hostages, but asks for no ransom.  What’s left in the aftermath, that ruinous mess, is choice.  One of my favorite books is really three: The Lord of the Rings trilogy by J.R.R. Tolkien.  In a particularly poignant scene, young Frodo shares a moment of doubt with Gandalf, who answers as a wise wizard would.

Frodo: “I wish none of this had happened.”

Gandalf: “So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”

Thanks, Gandalf, for being such a wizardly badass and for reminding me that I do have choices. But choices lead to questions.  Magical, provoking questions: What will I decide to do with the time given me? How can I transform this experience, transmute the leaden night of mind to a champagne dawn?  In a desperate move, I type this on my Google search bar: Can I buy my very own wizard on eBay?  Short answer: no.  I like Gandalf’s answer, but until I unravel exactly what it is that I want to do, I’ll have to keep treading water.  Big choices mix with storm clouds, and right now the water’s rough.  We’ve got Lauren’s 6 month scans coming up in about three weeks.  Moms in my Solidarity in Sarcoma support group call this “scanxiety.”  I’m surprised to see a web definition: “the tension which builds particularly amongst those who have or have had cancer as they move towards their regular check up scan, hyperscanxiety being the period as they await results!” The exclamation point at the end of this definition surprises me.  It is ridiculous, yet strangely appropriate. I have to laugh because grammar makes sense to me when so many things don’t.  After all, the last fourteen months of my life have been a series of question marks and exclamation points.  And ellipses, the series of dots that indicate an omission, an unfinished thought, or a trailing off into silence.  Because there are still things I can’t say out loud...  What’s in front of me right now is the biggest choice, the one I’ve been asking since that day, the worst day, the day of Lauren's diagnosis: Will I sink or swim?

For over nine years I have lived on an island.  Part of my daily routine, along with clean teeth and a cup of strong tea, is to watch the ocean—Mother Ocean with her steel blue, knowing eyes.  Believe me when I tell you that the ocean is alive, a professor to willing students.   As a lifelong and devoted learner, I study her watery expanse, read her waves, chronicle her tides.  But the water in me goes back even further, an ocean of knowing written on my body under the sign of Pisces. In this way, I was born to swim.

Today on our morning commute.  From the crest of Ponahawai Street we drop into Hilo Town, following a stream of cars ever closer to Connections Public Charter School.  While there are many different routes, this one graces us with an unobstructed view of the bay and of the Pacific Ocean beyond.  I take it all in through the furious swishing of wiper blades.  Swish, swish.  Billie Holiday’s “Stormy Weather” plays in the soundtrack of my mind.  Swish, swish.  The bay!  The water is gunmetal gray, turbid, surface roiling.  Not a good day for swimming.

As we drive I think of my son and his classmates, and how they will struggle later through fifth period at Carlsmith Beach Park.  Mr. Ebersole, ocean swimming teacher of middle schoolers, might offer this lecture on technique: We improve with practice and time.  So today I will practice my swimming.  Although I can’t yet see above the swells, I will work to improve my stroke instead of just trying not to drown.  When I tire, I will seek out and use life preservers that are offered to me: meditation, a chat with friends, self-care, writing, and, if necessary, happy pills. With time and practice I will make it to shore.  In the meantime, I’m getting stronger with faith that the Pisces in me carries with her a body of water knowledge, made stronger with my study with Professor Ocean.  Treading water, swimming, and embracing the time that is given to me.  

Unicorn Glitter And A Few Pebbles

I promised a post full of goodness last time, unicorns pooping glitter and such.  Here’s a bit of what makes for happiness chez Selden:

• Hanging out with my mom.  Having a glass of wine with her… or two.
• While I might not get there every day, the beach is never more than 15 minutes away.
• Papayas and pink lemons in my backyard.
• Two words: hot tub.
• Two more words: hot hub.
• Theo and Lauren were asked to participate in an advanced reading group at school. So proud.
• The fact that Theo and Lauren are back in school.
• Skittles being part of a dog pack again.  Roxie and Libby missed her so!
• But not as much as Roxie and Libby missed coming inside.  They’re SUPER happy about that.
• Heavy sleeping during a tropical rainstorm.
• Heavy sleeping during a tropical rainstorm in my own bed!
• Petting my mom’s cats.
• Reading books from my own library again.
• Figuring out Pinterest… finally.  (Thanks, Heather!)
• Ceiling fans and a cold drink on a hot day. 
• Cutting perfectly ripe market tomatoes (with a sharp knife) for a salad lunch. 
• Watching and reading political stuff, then insulting candidates as a bawdy Shakespearian.  You can do it too: http://www.buzzfeed.com/txblacklabel/shakespeare-insult-kit-28m7   I’m partial to this one: Thou pribbling, beef-witted, lewdster.  See?  I feel better already.

You must be thinking that my unicorn glitter is pretty mundane, but it’s just the right speed for this time of my life.  As a happy, horned quadruped, I frolic and prance most days.  But I’d be lying if I didn’t admit there were a few sharp pebbles in the magic meadow.  I’m happy to be home, but in a strange way I miss our community at the hospital and at the Ronald McDonald House.  I was chatting with my friend today, another mom whose daughter has cancer.  I admitted how hard it is sometimes to be around people who don't "get it," who can’t, don’t, or are unwilling to understand how altered our lives have become.  It’s exhausting at times.  And then I feel bad because how could anyone know?  The best any of us can do is to listen and try to be supportive of our loved ones.

Rock, meet hard place.  Here’s an example:

Today is Torture Tuesday.  Lauren was upset this morning because she was missing her social studies class.  Funny that, my kid loves school.  So we’re sitting in the little office in the basement of BJ Penn’s gym for a physical therapy appointment.  Mid-session, a mutual acquaintance walks in.  We knew this lady BC (before cancer). She’s sweet, fun, and a little crazy in a laidback-surfergirl kind of way.  Anyway, she asked if we had tried noni leaf to "cure" L's scar and to help “heal the bone inside her leg.”   (If you aren’t familiar with noni, here’s scholarship á la Wikipedia: http://en.wikipedia.org/wiki/Morinda_citrifolia)

Our exchange went like this:

Crazy Sweet Lady at PT: You chew up a handful of young noni leaves, then smear the paste on the wound. Cover with mature leaves.

ME: Umm. She's still got small open parts on her wound. Not sure it would be good to chew it. You know, saliva and such.

CSLaPT:: Oh no, you gotta chew it. It's totally okay. There's something in the spit.

ME, in my head: Yeah... bacteria. That's the 'something' in spit. Why would I put the leaves of something called "dog dumpling plant" in my mouth? And good to know you received a medical degree while we were away this last year. Ahhhh!

ME, aloud: Well, um, thanks. (Weak smile)


I know this woman means well, but she rolled her eyes that I would question natural healing methods.  Ugh!  What does she know?  And in that moment, I inwardly roll my own eyes.

Have I become that kind of person?  Someone jaded. A hardened shell instead of a soul transformed by experience?   Don't blame the noni or its "dog dumplings." It's me.

I used to be cool.  The BC Piper would not have poo-pooed native healing wisdom. I’ve spent my time roaming the aisle of crunchy granola health food stores, burned purifying incense, worn Birkenstocks, and on occasion eschewed a razor.  But this feels different.  Over the last year we've spent too much time "in da house" of Western medicine: antiseptics; colorful, life-saving chemicals in hermetically sealed baggies; reliable pain relievers; heavy-duty antibiotics—you know, pharmaceutical interventions.

Is it paranoia?  I mean, how scary was Lauren’s MRSA infection in January?  We almost lost her. And who knows what could have happened without our pals on the Infectious Diseases team at Seattle Children’s Hospital.  Dr. Bell, Dr. Thor, Dr. Ducky Bowtie, and the drove of white-coated residents, I am forever in your debt and at the same time scarred by it.  My perspective has shifted outside the realm of chewed poultices and healing crystals... so much so that I have delayed seeing my own healer.  Will Jan, the most fabulous acupuncturist/masseuse even recognize me?  I want to believe in a grander, more holistic and encompassing vision of health and healing.  I want my chanting and smudge sticks, along with the rest.  It's too difficult to bridge the gap some days.

Chirping from my phone, a natural sound instead of a buzz or beep. The timer on my phone lets me know that rumination hour is finished.  For peace of mind, I’m back to unicorn romping in my magic meadow.  And to celebrate I will enjoy a pre-romp glass of wine.  Don’t ask how I can do this as a hooved animal.  I’m magical, damn it!

Vampire Porn, the Art of Procrastination, and the Not-So-Ruby Slipper Journey Home

Guilt.  The listing title of this post should begin with guilt.  I have not updated Lauren’s status for a good long while.  Where did I leave us last?  Ah, yes.  The Kelly Clarkson “Stronger” video that went viral.  We were in-patient and Lauren was fighting a nasty infection in her surgical site.  How could I leave you, kind readers, in the wasteland that is Infectious Disease (ID)?

Short version wrap-up for my friends with ADD:  The leg infection cleared, finally.  Lauren finished her final round of chemo. We packed up and said “Adios!” to our friends at the Ronald McDonald House (Can we get fries with a year of reduced-cost, medical crisis housing? And when I said, “Supersize me!” last July, I had no idea we’d be staying a year.) We drove to Vancouver/Portland area.  A smidgen of summer vacation. Sleep. Escapist reading (vampire porn and light YA novels). More sleep. A surprise visit from my father. My continued failure as familial peacemaker.  A much needed mini-trip to Las Vegas and Palm Springs, courtesy of my sister Laurel.  Back to Seattle, stayed with Todd’s brother and his family.  Surgery #6 to remove screws in the growth plate of L’s knee.  Lauren’s 12th birthday, celebrated in the hospital.  A wringing of hands and wrangling of paperwork between two vets and the Department of Agriculture to get our dog back to the State of Hawaii.  A long flight home.  The waiting crowd of friends and family at the Hilo airport.  Upon arrival, the discovery that my cat was missing, having been housed for a year at a no-kill shelter, escaping said shelter, and wandering into the nearby forest. Unpacking suitcases and boxes. Cleaning. More cleaning. School shopping. More unpacking. Cleaning. Sorting. Purging. A reunion with my hot tub and hot hub. First day back to school. Another staph infection. Surprising the primary care pediatrician with our ready supply of antibiotics. The year-long overdue library book. A 504 plan. And the “new normal.”

Rounding up for the rest:  This is a long post, flavored with a heavy syrup of doubt and discontent.  Press on, but reader beware.

Infections and the like. It’s hard to describe the past few months.  Perhaps that’s one of the reasons I’ve procrastinated in updating CaringBridge… to the point of CB guilt.  Another exposure to chickenpox, more isolation, and another bad infection in Lauren’s surgical site.  How can I describe to you the desperation to be rid of the tiny microbes making infection in my daughter’s body?  Little bastards.  My hope that every bag of badass chemicals will eradicate the offenders, send them straight to the chilly heart of Dante’s Inferno.  There is a strange, false sense of hope in living at a hospital.  Because that’s what we did there: we lived.  Looking around, I see sophisticated machinery, sterile equipment, and efficient professionals—surgical scrubs; booties on feet and caps on heads; white coats with monogrammed names on pockets; clipboards in hand; fat charts with scribbled notes along margins; doctors, residents, internists, and nurses pushing COWs (computers on wheels) from room to room, patient to patient—professions with initials before and after their names to assure me of medical training.  I want to believe that these added components, the superstructure and staff of a “hospital,” ensure a certain measure of safety, that nothing bad can happen within the four walls of our sanitized hospital room.  And while part of life is death, I don’t linger there.  Can’t bear that bit of truth even as a remote possibility.  What I’m foolishly grasping for is scientific certainty with a happy ending. Modern Science prevails!  In actuality, what I desire is medical fiction with strong characters, a clear plot, challenges overcome, and a satisfying conclusion.

Lauren and I are midway through a DVD episode of “Veronica Mars.” A modern day Nancy Drew, she always solves the mystery.  More happy endings.  Knock, knock.  Not from the TV.  Dr. Bell’s kind face and soft British accent push through the privacy curtain, interrupting us.  He has news, or so I hope.  One of the ID docs on our “team,” it is his job to splash cold water statements in my blind hope face: “Sorry, nothing yet.”  We’ve been here for days and the fatigue shows. “Sometimes it’s a guessing game with these kinds of infections,” he continues. “We draw blood, culture it, and hope to pinpoint the trouble-making microbe or bacteria.  But that doesn’t always happen; sometimes we don’t ever discover the culprit or culprits.  We simply administer medication and see what works.  Keep up with that.  Tweak things until the infection subsides. Hope the bug doesn’t return.”  Conversations like this do little to fill me with confidence.

I fight with myself.  I desire simultaneously to escape reality and turn to face it head on.  What can I do but be present, ask question, and take notes.  I take myself out of the equation and zero in on details, my own observations.  Later I will attempt to make sense of it all for those seeking updates about Lauren.

Chronic illness with extended stays in a hospital is isolating.  The task I’ve set myself is to describe scenes of our experiences in an attempt to draw friends and family near.  But how can I accurately portray such heat, as it emanates from her body during a fever?  What about finding the right shade and hue for her flushed cheeks?  Or the acrid, metallic ting in the air when she sweats during medication-induced sleep?  These are pieces of a remembering puzzle that I don’t want to forget or intentionally misplace.  These raw memories, images that flash against the black of my closed eyes at night, are important pieces of our lived experience this last year.  And then when is detail too much?  Maybe others out there want medical fiction too… or just the Cliff’s Notes edition.  Lauren was diagnosed with a rare and aggressive cancer.  She moved from her home in Hawaii to Washington State for treatment.  She spent a year at Seattle Children’s Hospital and was treated with surgery and intensive chemotherapy.  At the end of that time, her doctor declared her “NED” (No Evidence of Disease).  She flew back to Hawaii and smiled at her homecoming reception.  She lives and has her leg.  The end.

But it’s so much more than that.  There are details that will stay buried, unless Lauren decides to share them.  There are details to painful to share presently.  Life on fire.  Blazing and bright, certain scenes are still too hard to view.  We squint our eyes against the glare, step back from the heat.  At the ready for snapping twigs, popping embers, and sizzling sap. Perhaps the intensity of some details will settle eventually, like dying cinders in a campfire.  Perhaps, but not today.    

I remember my first taste of Scotch.  Tipping back the glass of amber liquid, how my lips burned!  The fumes brought tears to my eyes and liquid fire seemed to evaporate halfway down my throat.  I swallowed reflexively, doubting that anything went down.  I felt I might gag.  At the time, all I could capture was the shock, the intensity, the physical descriptions.   Cancer is like that.  Straight up with no chaser.

The infection eventually cleared up.  Dr. Bell and his colleagues beat it back with a potent six week cocktail of broad-spectrum antibiotics and antifungals.  They were unable in the end to isolate any one responsible microbe or bacteria.  The docs prescribed top-shelf medications and hoped for the best.  Thank goodness it worked, Lauren’s “Hail Mary” Happy Hour.

End of chemotherapy: Lauren’s last chemo was uneventful.  By coincidence or fate, we found ourselves in the same room of Lauren’s first in-patient chemo.  We recognized a squiggled pattern on the ceiling tiles, dried evidence of Silly String.  Lauren and I took this as an outward sign of good fortune; a celebration was held at some point by someone in this side of the shared room.  We decided to have our own party.  Late in the evening of May 14th, Nurse Todd logged doses into the computer as Nurse Leesa hung the LAST bag of chemo.  Name band check.  Lauren recited her name, spelling out her first and last name, along with her birthdate and medical record number.  Karen, the hospital’s social worker assigned to bone tumor patients, stopped by to offer congrats and give hugs all around.  Todd (ours, not the nurse), his brother Kris, Lauren, and I made a ruckus, blew on party favors, and shot our own Silly String around the room.  Later, the graveyard nurses dropped by for goodbye wishes.  Nurse Beefcake (Ross) and Nurse Sugar Buns (Aaron), two of Lauren’s favorites, posed for pictures with her. How we will miss the kind staff at Seattle Children’s.  Not the beeping machines or round-the-clock vitals or necessary but nausea-inducing medications.  We will miss the people.

Goodbye RonDon: After a year in Seattle, we packed up and left the Ronald McDonald House.  How strange to say goodbye to this place we have called “home.”  There’s no place like…  How sad to say goodbye to good friends we have made along the way.  How exciting and yet terrifying to be out on our own, away from the safety net of managed hospital housing care.  We left with far more than what we brought.  Gifts, mementos, medical supplies and equipment.   Todd shipped two full pallets back to Hawaii, along with the car we originally shipped over.  After our escape on June 7th (Todd’s birthday), we drove to the Vancouver/Portland area to spend a mini summer break with my sisters and their families.  I loaded up on books at the Dyment lending library (Thanks, Lo!), mostly light plot vampire porn and young adult novels.  Decompression reading.

Reading fluff becomes a task I can accomplish, something tangible I can point to: 127 pages read.  A popular series.  Three books, five, twelve.  Reading fluff keeps me from thinking about the larger, looming list of things To Do.

My sisters are still fighting and I have no energy for peacemaking, especially when the final blowup had to do with our family situation.  What I can’t afford is to have vital energy sucked from my body when I’ve done what I can to safeguard it.  One sister lives in Vancouver, Washington.  Another lives in Portland, Oregon.  Two sisters, separated by a rift of fast-moving Columbia River.  To travel from one to the other, one must cross bridge after bridge, fighting traffic both directions.  I say "one," but of course I really mean “we.”  Todd, the kids, and I cross bridge after bridge after steel-cabled, plunging heights bridge. My kids are closer in age to their cousins in Vancouver, so the request to stay with that sister makes the other feel slighted; an imposed sense of fairness demands that our time should be split equally between the two.  Should.  I hate that modal verb!  As an auxiliary verb, is it helping?  Really?  The word “should” is used to express condition, to indicate duty, propriety, or practicality.  It’s a cop out word of etiquette and expediency, much softer than “must,” which indicates obligation.  While the rational bit of my brain sees this familial contract in black and white, the black is not indelible ink and the situation not clearly white.  The pressure to do and act right as not to offend is not black and white at all; it’s a mass of muted, layered gray and I sometimes resent the burden it implies.

Vancouver offers more in the way of creature comforts I can’t quite define.  Maybe it’s the character of my sisters, what I see at this place in my life.  One sister is more intense than the other—questioning and doing.  The other sister exudes a spirit of laissez faire.  Mountain hike to sweeping vistas or meandering stroll through peaceful glens, I exhaust myself with one and feel a twinge of guilt in the other.  I shouldn’t, but I do.  (Should again.)  I joke about being neutral Switzerland until I’m reminded they conspired with the Nazis.  Choose another location.  Closer geographically, Canada beckons a “Olly olly oxen free.”  Who in their right mind could be pissed with the peaceful, maple leaf-loving Canadians?  I move there psychically, knowing Canada has national health in case Lauren relapses.

In the midst of this familial shitstorm, my father comes to visit.  To my knowledge the man has not set foot in the Pacific Northwest in 30-some years, since shortly after my parent’s divorce.  Not for any of our graduations, nor for weddings.  Yet here he is.  Battling cancer himself, he has come to visit Lauren as a show of solidarity and because he understands more than we what the past year’s struggle has cost her mentally, physically, and emotionally.  This I believe.

It’s good to see my father.  He looks… lighter somehow.  Open.  Relaxed.  The visit should not be complicated, but it rapidly becomes so.  Where will he stay?  How will the time be divided?  We see him so infrequently; the visit becomes less about Lauren and more about everyone else.  I’m going to leave it at that.  Papa returns to Santa Barbara and we slip back to geographic divides.  “O Canada! My home and native land!”  One sister and her family depart for a trip back east to visit family and pick up a new car.  While she is gone, the other sister and I take a trip that has been in the works since before Lauren was diagnosed with cancer: Las Vegas and Palm Springs.

These cities, particularly Las Vegas, blow the top off my bottle of surreal life soda.  The lights, vibrancy, and excess in these desert cities is both expected and not.  Daytime, we tourist around town or sit by the pool.  Hot.  Scorching hot.  Air and wind that must be the exhalation of Satan.  Nighttime, as in other desert communities we’ve visited, is frenetic—a riot of color and sound.  I think back to a trip we took with the kids to India.  In Rajasthan we discovered a desert alive at night.  Too hot during the day, people swarm in the cool of evening—nocturnal animals—for physical and social needs: food, drink, dancing, conversation.  Here I felt another shift in my body clock, a fitting and more natural rhythm for the environment.  In Vegas and Palm Springs we look, lounge, and live for a week in accordance with those places.  Instead of returning refreshed, I come down with a case of “what next-itis.”

Back to Seattle.  Lauren’s sixth surgery.  Dr. Chappie removes screws from the growth plate in her knee.  The hope is that removing these screws will allow her continued growth.  The question is whether or not the bone is stable enough yet.  Lauren turns 12 in the hospital, a strange sort of celebration.  Nurses in paper hats; a quiet rendition of the Happy Birthday song (as not to disturb our hospital roommate); a vanilla shake instead of cake, Lauren’s tummy is still upset from the anesthesia.  We check out and do what’s needed to get back home to Seattle.  Our “year abroad” comes to a close.

When the boarding door of the plane opens in Honolulu, moist, tropical air blankets us.  My skin drinks it in, feels the elements pushing under its layers: water, air, earth, fire, and spirit.  I follow the Department of Agriculture agent at our arrival gate for their airport examination of our dog, Skittles.  My friend Jill meets me at the DOA office with flower lei.  It’s nice to see a friendly face, get a flower-scented hug.  Our dog’s paperwork is in order, so after a short “local kine” delay, Skittles and I are released and return to join the rest of the family at the inter-island terminal.  A 45-minute flight and we’re in Hilo, a year a ten day after our original departure.  A lovely crowd of friends and family awaits us.  Smiles, tears, pictures, banners, flower lei.  Then home.      

What I can say about opening the front door of our house is that it didn’t feel like our house.  Odd, after fantasizing about our return. Unexpected, strange things: the furniture was rearranged; items I didn’t recognize; foreign smells.  The dogs were barking at us, the bark that signals a stranger’s approach.   Our dogs were barking at us, I realized.  In my bedroom, small items shifted but mostly the same.  Minus the items that showed a cat lived here too.  My cat.  Gone.  Her name was FC (short for Feral Cat) and she’d been with me from kittenhood, rescued from her short life as a feral kitten.  After we left and without my knowledge, kitty was taken to a no-kill shelter, an open air, free-roam place run by someone I know.  Apparently she ran off into the forested area behind the shelter and hasn’t been seen since.

I am reminded that no one really liked kitty (as if to lessen the sting), but I did.  My mother tells me the story on the way home from the airport: “I need to tell you something… and you’re probably not going to like it.”  I feel sad and strangely betrayed.  For whom and by whom, I don’t know.   For years, the cat lived under the bed, coming out only late at night after the dogs were tucked in and behind closed doors with the kids.  FC was antisocial and reclusive, but she was my antisocial, reclusive cat.  She’d slink out at night, joining me for TV or curling up at the foot of the bed for a grad school reading: Aristotle, Shakespeare, Pope, Marx, Nietzsche, Foucault, Cixous, Lejeune, and Butler.  People who don’t require more than a single name for recognition.  Scratch your head reading, where petting a cat helps calm the mind, the kind of reading I have been physically unable to process since Lauren’s diagnosis.  In a way, kitty was a furry bridge back to academia.  (Ha! I hear some of you laughing. Or perhaps scoffing in disbelief.  Insert my own mental image of eyes rolling from readers far and near.)  Understand though, my cat was a late night, purring study buddy.  After everything our family has been through, it might seem stupid to mourn such a thing, yet she was a part of this place called “home.”    

Three clicks on the ruby slippers and a whispered: “There’s no place like home.  There’s no place like home.”  And there isn’t, is there Dorothy?  I am shocked by a hidden truth: nothing has changed and yet everything has.  It doesn’t feel like a satisfactory end to the epic journey we’ve been on this past year.  (Oh! how I despise that particular metaphor: journey.  Like we’ve been on safari to Cancer Land.)  My natural rhythm has changed; and although an 8:00 p.m. granny-goes-to-bed-hour finds me drowsy, I’m not sleeping well through the night. Restless dreams plague me, dreams in which I search for something that cannot be found or find something I shouldn’t.  I have concrete tasks in these dreams, items to cross off a hellish To Do list, but my concentration is lost.  A previously held certainty about which path to take in life tears me to bits.  Was it ever the right path?  The answer to life’s questions demands my attention as I toss and turn at night, leaving evidence of the struggle by way of loose fitted sheets, pulled free of their cornered moorings.

Just before dawn the air around me sparks with anxiety.  Dreams fade.  At this time the veil between sleeping and waking is gossamer thin and vulnerable.  My soul rips from my body and travels I know not where, leaving the corporeal me an empty, undiscerning shell.  If asked any question, my answer would be the same: I don’t know.  But questions about my life’s To Do list aren’t light ones, nor is my examiner gentle with his delivery.  It’s Alexander Pope, of course, a nagging phantom from a bit of unfinished coursework.  AP is not one to beat about the bush: What are you doing with your life right now?  For God’s sakes, Piper, what’s your direction?  Do you plan to finish the PhD or are the Master’s degrees sufficient?  C’mon, woman, think!  You say it will leave a hole, feel unfinished.  Do you even think you have it in you to finish?  Will you stay in Hawaii or move back to the mainland?  What are your priorities?  Truly.  Do you care about your business anymore?  Why bother?  What does your husband want?  What do your children want?  Yes, children.  You have two, remember? Your mother?  The rest of the family? What do YOU want?  As my mother’s second husband would have said, “The answers are clear as mud.”  Raw dream matter swirls about the empty, echoing cavern of my mind.  Calm waters of my mind are turbulent again: searching dreams; cross purposes; trying to catch what eludes me. I dog paddle, tread water through the inquiry with Pope, then drown.  

The kids started a new school year just four and a half days after our homecoming, promising (I had hoped) to return us to regularity.  A schedule. Normal life, whatever that might be.  Not so.  Well maybe a little.  I shouldn't be so glum.

*

Is it good to be home?  Yes and no.  In some respects, it still doesn’t feel like home.  Or I don’t feel right. The peg I was a year ago no longer fits exactly the hole it left.  I’m sharper in some places, rounder (much rounder) in others.  I’m left with unsettling questions when I’d rather have answers.  Shouldn’t I feel solid again?  After all, we’re supposed to be DONE, right?  Someone please tell me we have closed the chapter on this season of discontent!  Where does all of this leave us?  Will I swim out of this miasmic sea of doubt and depression?  Can’t I just be happy?  And this CaringBridge updates its readers about whom?  Is it Lauren or me?  Strange and almost foreign to think of either of us as truly separate entities after this experience.  It’s like a second birth experience: one moment you are two as one, the next separate, but not fully.  And as a separate self, how will Lauren respond to this newness of life, her childhood (and body) forever altered?  How on earth does anyone survive this experience intact?

Then it comes to me: They don’t.  Not really.


 (Note to reader: I promise my next post will not be so dismal.  Rainbows and unicorns pooping glitter the whole way!)

Even Stronger

We are flabbergasted by the response of the “Stronger” video.  Initially, we imagined that only our close knit cancer community here at Seattle Children’s would see it.  Who could have imagined over half a million hits in just a few days… and a response from Kelly Clarkson herself?  Just after physical therapy today, Austin Rainbow Bead, the Childlife specialist for in-patient cancer kids (so named for the type of bead Lauren earns with the Beads of Courage program), popped into our room and asked us to join him in the glass block area.  When we arrived, many of the other kids from the video were there, as well as a bunch of media folks.  An open laptop sat on the table facing the kids.  Austin told the kids that Kelly Clarkson had a special message for them. [Insert sound of a bunch of kids and parents screaming, talking, and clapping all at once!] Finally things quieted down and Austin played Clarkston's clip. It was really exciting listening to her talk to the kids.  The media folks filmed them watching and sent a clip to Clarkson’s people, who added the response footage.  They released the full clip to YouTube: http://www.youtube.com/watch?v=nSFrPHWLKJg&feature=share   [Lauren is in an aqua tank and her signature pink pig hat.]  

What a trip all of this has been and after so much hardship the past few months. In the last year, really.  One of the surgeons came by later this afternoon and checked on the wound.  I still cannot believe that the original plate in her leg broke.  What pain this girl has been through!  Apparently, it’s always a race to see what happens first: either the new bone knits on both ends from the stimulation of physical therapy or the plate breaks.  The plate isn’t designed to hold body weight on its own, but body weight is needed on the femur to help it heal faster.  She was doing everything right and feels as though she is being punished for working so hard at physical therapy.  She certainly is a FIGHTER!

Lauren is still in-patient.  Last Thursday we arrived at our PT appointment and didn’t leave the hospital.  As the therapist started to manipulate Lauren’s knee, she told us it felt hot to the touch.  Ugh.  Just the day before we had an evaluation with Sue, one of our nurse practitioners.  I mentioned that the surgical site was starting to “pink up.”  This is exactly the way things started with the last big infection in January.  We were in isolation then and she was treated for MRSA.  Scared the heck out of all of us.  We think the dangerous bit is over—discovering the tumor, finding out it was cancerous, having to relocate to Seattle at a moment’s notice, starting chemo and all the sickness that goes with that, bumping along with all the serious allergic reactions, and then surviving the big surgery and trying to recover, and learning to walk again—and then… BAM!  We know others who have lost their children here, not from the cancer itself, but from secondary causes like infection.  As a good friend we’ve made here would say: Jackass cancer!

After PT on Thursday, we stopped down the hall for a clinic check of the knee.  They ordered labs, did a physical exam, and then “invited us to be their guests in-patient.”  It’s a good thing that by now we keep a bag partially packed for last-minute admission trip.  Reminds me of when I was pregnant and kept the “Go! Bag” ready packed for labor and delivery.  Things we keep at the ready: clothes for a few days; travel toothbrushes and toiletries; a roll of quality TP (Hospital TP is like sandpaper.  Really.  It seems cruel; Lauren needs more torture than she’s already receiving with the cancer treatment?); a current copy of her prescription medicines since out-patient and in-patient computer systems don’t sync; a few canned, non-perishable food items (Who can afford to eat at the cafeteria day in and day out?); and a can opener.  Keeping a partially packed bag at all times cuts our packing time down to about 5 minutes, and time is a factor when we need to get to the hospital quickly.

Due to the type of treatment Lauren receives, we are required to live within a one hour travel window of the hospital.  But they –prefer-- for us to live within a one-mile radius.  Chemotherapy of any type depresses the immune system and the treatment protocol for Lauren’s type of cancer is quite intensive.  She receives a multi-day “cocktail” of chemo drugs every two weeks with no recovery breaks in between.  Dr. Hawkins’ motto is: “Hit it hard and fast.”  Hawkins is Lauren’s primary oncologist and (cue the dinging bell!) the national protocol director for Ewing’s sarcoma.  Ewing’s is a rare and aggressive form of bone cancer.  Most of the folks we know here with bone cancer have osteosarcoma.  The treatment course and drugs are different, but then cancer is still cancer.  We don’t play “one-up” games here.      

So Lauren and I have enjoyed entertaining the troops of doctors, nurses, and medical providers this past week.  We’ve had visits from the O’Dark Thirty rounding orthopedic surgeons, the HemOnc doctors who do their rounds at a much more humane hour, and a spattering of visits from the Infectious Diseases team, brought in to consult on the case.  Of all the blood cultures they have taken, the doctors have yet to find the culprit responsible for the infection.  They are worried that the surgical site is infected, but even more so that the infection might be in the new bone or around all the metal hardware in her leg.  I bet the girl could set off alarms at a TSA check!  To start somewhere, the interdisciplinary team ordered two broad-spectrum IV antibiotics and an IV antifungal.  We’re hoping that her bloodwork from the labs tonight will be good.  Lauren’s white and red blood cells, platelets, and ANC (absolute neutrophil count) must be at certain levels to safely enter (and endure) a round of chemotherapy.  Her bone marrow has been “tired” the last few cycles, and then we had the surgery and infection.  We don’t want any delays that might make her susceptible to a relapse.  It’s so strange to want the drugs that will poison Lauren’s system to within a hair of what’s safe; however, that’s exactly what is required to cure the cancer.  And then the chemo drugs are also carcinogenic, meaning that the cure itself can cause cancer.  Ironic and cruel, methinks.              

I’m just getting to bed now after a long day and night.  We had the exciting Kelly Clarkson thing, all the doctor and therapist visits, a new roommate (and what seemed like 50 of her closest family members and friends all crammed into one half of an already small hospital room), and then a telephone interview from a reporter at the Hawaii Tribune Herald.  Lauren was so excited to talk to the guy.  She was bubbling over!

Fingers and toes and everything else crossed for good blood numbers tomorrow.  The nurse should be back in to draw blood in about an hour.  Until then, I’ll see if I can catch some Zs.  Failing that due to the sonorous snoring from our roommate’s dad, I’ll probably moonwatch from our window.  Fog is rolling in over the trees and across the small patch of lawn that the all-night security lights illuminate.  In these quiet hours I find a small, cherished measure of peace

Dear Ellen

I wrote to the Ellen Degeneres show today. It would be so great for Chris and his work to get national exposure, along with the other cancer fighting kids, their famies, and the hospital staff. When I checked tonight, the "Stronger" video had 23,000+ hits. It's viral--the good kind. More on our own viral, fungal, or bacterial infection woes later. I don't want clouds on this sun shiney moment!

Love to you all.

--P

----------------------

Hi Ellen! 

I am sending a very SPECIAL YouTube link, a video that was filmed by Chris Rumble at Seattle Children's Hospital where my own daughter is being treated for cancer. She is in the video--the spirited young girl holding the FIGHTER sign in the chorus (glasses and a black tank). I'm sending this to you for a few reasons: 1) My daughter is a HUGE fan of yours; 2) There's dancing! 3)The video features Talented Kids; 4) The kids here show bravery and joy in the face of serious illness and should be acknowledged. 

Ellen, this video shows the strength, determination, and perseverance of young cancer fighters, as well as the love of those who care for them. These kids are amazing. It's not easy to be here, but I can't tell you how much laughter and joy fills the halls at the SCCA (Seattle Cancer Care Alliance) wing of Seattle Children's. Our story: We moved to Seattle from our home in Hawaii last July, just days after my daughter's 11th birthday. She was diagnosed with a rare and aggressive form of bone cancer and we had to move quite suddenly for medical treatment. When we aren't in-patient at the hospital, we live at the Ronald McDonald House, a few blocks from Seattle Children's. But our story is not unique. People do what they must to save the lives of their children. We have had dark days, to be sure, but there's joy too. The patients and families here, as well as nurses, doctors, and medical workers, have become like family to us. We help each other live...and laugh.

Stronger

Lauren and Her Auntie Gaby

Lauren is a FIGHTER, as represented so beautifully in this video filmed at the SCCA (Seattle Cancer Care Alliance) wing of Seattle Children's Hospital.  My girl is strong; she is beautiful.  My heart opens and breaks and shatters into a million diamond shaped tears...

http://www.youtube.com/watch?v=ihGCj5mfCk8

News Piggie

We’ve been hanging out at our home away from home, The Ronald McDonald House, doing a whole lot of nothing for the past several days.  The weather has been pretty nice, so it feels a bit like torture to be inside.  Here’s why we have to hang out: after Lauren’s type of chemotherapy, the body’s blood counts start to drop (red blood cells, white blood cells, platelets, the whole shot).  Everything gets nuked during chemotherapy, which makes Lauren particularly susceptible to “bugs out there.”  We get into a dangerous zone about a week after chemo.  That’s right about tomorrow.  Exposure to coughs, colds, viruses, and the like when she has low counts can be life-threatening.  So it’s a little like a self-imposed isolation.

Lauren has more chemo tomorrow, but then we’re clear with nothing to do but physical therapy (physical torture!) until next week or so.  Until then, we’re planning to lie low; we don’t want to do anything to delay her treatment any more than it has been already.

Something I wanted to share.  Lauren and some of her classmates participated in a fundraising event for Puget Sound Blood Center.  As cancer patients, she and her friends have been the recipients of blood products with numerous transfusions for each patient.  Lots of red beads on Lauren’s Beads of Courage strand, about 35' right now (http://www.beadsofcourage.org/pages/beadsofcourage.htm  ).  Lauren attends school at the hospital itself at Seattle Children’s. This allows her to continue with her studies and not fall behind during her treatment.  She is also able to come to the school room with her IV pole and/or have the teacher visit her when she’s in-patient and not feeling well.  I laugh and tell her: “You CANNOT run from school!”  The kids in Lauren’s school painted masks to auction at the fundraiser.  Here’s a link to the news report.  Look for the smiling girl in the piggy hat:

http://www.king5.com/health/Kids-with-cancer-create-art-to-benefit-Puget-Sound-Blood-Center--149314495.html

That Stupid, Stupid Leg Brace

Lauren tells me tonight that the stupid doctors should have to wear the stupid, big, black brace at night so they can see for themselves how uncomfortable the stupid thing is.  She needs to wear the stupid thing to make sure that she maintains full extension on her leg.  In other words, it's all about how straight she can make and keep her leg.

The problem is this: the stupid, big, black brace isn't super comfy... and she's got a fresh incision that runs about 18" down her leg from the top of her hip past her knee.  Ace bandages scratch her skin at the velcro connection (even when it's tucked and positioned properly) and yoga pants are too hot underneath.  We haven't tried tights, but that seems extreme for sleepwear. The brace cannot go directly on the skin because it also scratches. Arg!  What's a girl to do?  Well, if she's my girl, curses the thing with loud and colorful vocabulary, dissolve in tears, takes her night meds, and tries to fall asleep (eventually succeeding) in the stupid, stupid leg brace, all the while cursing those stupid doctors and the stupid cancer.

My heart breaks for Lauren when she's so desperate and sad.  It's wearing. Resolve and good intentions break down.  Energy lags.  And it all gets a little too much.  The wicked dexamethasone takes 2-3 days to leave her system: http://en.wikipedia.org/wiki/Dexamethasone
Steroid rage is a real and ugly thing.  It's not fun for anyone, especially Lauren.  One moment she's fine, the next she's spitting fire, the next she's laughing, and the very next minute she's weeping uncontrollably. It's days like this that we all try to muddle through the best we can.

Tonight (pre-stupid black brace breakdown) we braved the early evening mist, otherwise known as spring in Seattle.  We walked next door to MetroMart and bought an odd array of items for a picnic on the bed.  I posted our goofy dinner to FaceBook as we watched a marathon of movies featuring Johnny Depp as Captain Jack Sparrow.  We spoke like pirates and tried to think happy thoughts.  We tried not to feel sad or annoyed or frustrated as we pulled crispy skin off Lauren's chicken and fed it to Skittles.  Lauren looked up nearby massage and nail places (pedicures) for a Mother's Day mother/daughter outing.  And both of us tried not to cry.  It's a tough assignment some days.

We're going to get back on the physical therapy bandwagon tomorrow. She's got leg lifts to do, as well as stretches.  There are so many things that Lauren is REQUIRED to do, places she has to go, procedures she has to endure.  But tomorrow we're gonna sleep in.

As for me, I hope for a little less steroid madness--my sweet daughter as Linda Blair from the Exorcist. Steroids do awful things to some people. We get it, the crazies, complete with 360 degree head turning and bodies flying around the room.  But as bad as it gets, as angry or frustrated as I become, I find it hard to be angry with Lauren.  She didn't ask for this.

How many times can I say "Cancer Sucks" before it sounds hackneyed and/or cliche?  Cancer Sucks.  "Yeah, thanks for the news alert, Captain Obvious."

I promise, reader, that not every CaringBridge posting here on Lauren's site will be drippy and depressing.  I wonder, sometimes, if others suffer the same kind of "bummer fatigue" that I feel day to day.  Who wants to read sad news all the time.  I mean, where are the dancing men in gold lamé? Where are the wish granting unicorns, who eat candy corn and poop glitter? Where is my winning lotto ticket and my four leaf clover? More importantly, where are these things for Lauren?

Happy thoughts.  Keeping our faces to the sun.

An Ode to Nurse Beefcake and Other Things That Make Us Happy

Nurse Beefcake, thank you for your cool-cat beefy ways. Thank you for sauntering into our room tonight and bringing a smile to my daughter’s face.  Your distracting ways take her mind off the nausea and chemo and cancer for a few precious moments.  Do you know what makes me happy?  Your sweet, kind, steamy presence allows my daughter to be a regular girl who crushes on a regular guy like the rest of her regular friends back home.

A new Kindle Fire makes us happy because it makes you happy, my daughter.  How could I say no to a piece of technology after you sold me on it: “I’ll be able to read books on it, Mom.  I could listen to music and watch movies and check FaceBook when we’re in the hospital.”  How could your dad and I say no to you after all of the things you’ve been through these past nine months?  I’ll continue to love and read my paper books like the old-school girl I am.  I’ll continue to love the way a book feels in my hands, the whole sensory experience—the smell of books old and new, the way the paper feels under my finger’s caress.  I’ll continue to be a hedonist and bibliophile with physical tendencies and I’ll continue to love the techie in you.



And the other things that make us happy?  Dancing to music and feeling the beat, no matter who might be watching.  A bag of bunnies.  Pillowcases made with love.  Cards and care packages and loving posts on FaceBook, including YouTube videos of dogs that talk.  Honestly speaking, quality toilet paper makes us happy.  Rainbow beads make us happy too, as do our favorite rainbow bead people: Sonia and our Child Life heroes Austin and Ashley. School, reading, good movies that make us laugh or cry, and sunshiny days.  And driving down 1-5 towards Portland makes us happy.

Dad’s mashed potatoes.  Fuzzy blankets and PJ pants.  Friends who love us with or without hair.  A single room for chemo when we were expecting a triple.  Roller derby love and our derby sisters make us super-duper happy.  Bubble bath that smells like Hawaii and dreams of summer.  Family.  Friends.  

Lions and Tigers and Fevers, Oh My!

It’s been a while since I’ve updated and quite a bit has happened.  This experience the past few weeks has really bankrupted us… physically and emotionally.  I know that I’m exhausted and can only imagine how tired Lauren is.  SO tired.  More than tired.

Check out the hardware!

Out with the old (the broken plate and several bone screws)

                                               And in with the new (longer screws and pins)



The revision surgery to install a new plate in Lauren’s leg went well (April 11th).  Lauren seems to have more mobility in that leg now, including a tiny bit of dorsiflexion (the ability to lift her foot up).  That’s a big HURRAH! as Lauren has not been able to lift her left foot at all since the big surgery last November.  “Foot drop” (http://en.wikipedia.org/wiki/Foot_drop) is a risk with limb salvage surgery, a procedure that removes cancer (most often bone and soft tissue tumors), avoids amputation, and preserves appearance and function of the limb as much as possible.  Lauren’s primary orthopedic surgeon (rock-n-roll star Dr. Chappie Conrad) helped pioneer limb salvage surgery in the United States and established the bone tissue bank in Seattle.  It would be fair to say that Dr. Chappie saved Lauren’s left leg.

Floppy foot drop is a result of damage to or stretching of the peroneal nerve. In Lauren’s case it happened when the tumor in her left leg was removed, along with much of her left femur.  Foot drop can be temporary or permanent, and can cause tingling, burning, and/or “pins and needles” pain in the affected limb.

L's AFO is purple/blue with stars

Lauren wears an ankle foot orthotic (AFO) and takes a medicine called gabapentin to treat nerve pain.  In addition to general pain and annoyance, the condition has slowed her physical therapy efforts.

Walking is more difficult without full foot sensation.  That said, seeing even a small amount of dorsiflexion is important because the nerve takes up to 6 months to heal; after that window has closed, recovery of the nerve is less promising and a normal walking gait is not possible.  (Try to walk without lifting the foot and you’ll see what I mean.)  Lauren is at the end of month 5 in that 6 month window, so the dorsiflexion is super exciting news!  Keep your fingers crossed for continued progress in the foot-lifting department.

I will say that this latest surgery meant more pain for Lauren.  It’s more physical therapy—starting over from the beginning.  After ALL that hard work?  We rant and rave, we make faces, get angry, sulk, and cry.  Yup, this whole “do over” surgery and recovery to fix the broken plate makes me want to cry.  Then I think how much stronger my daughter is than I am... and I don’t have the physical pain. Speaking of that, Lauren is back on long- and fast-acting morphine, instead of the occasional breakthrough oxycodone.  My girl has a pretty high pain tolerance, so that’s saying something right there.  *sigh.

Pain isn’t just the bodily type, but rather, it’s written there. Would it be too much to call all of “this” depression or simply the blues?  Lauren’s scar that was nearly healed for a summer of swimming is back to a red, raw, fresh wound; the doctors say she can’t swim until all of the scabs are gone.  Drag.  And as shallow and vain as it might seem, I think the new wound makes her all the more self-conscious.  Up and beyond the typical self-consciousness of a middle-schooler.  With cancer.  With no hair.  With a limp and two leg braces. With a giant red zipline down a once perfect leg.  Her original incision is now several inches longer to accommodate the new hardware and plate (longer, thicker, and wider).  I’m making a big deal of this, perhaps.  She’s lucky to be alive.  She’s lucky to be alive. And she's lucky to have her leg.  I understand this deep within the logical left side of my brain.  Perhaps I’m projecting, hearing her as I do when she cries in the shower, looking down at her water glassed gams, imagining what she’s thinking when she can’t even tell me.  This new scar.  Our home is Hawaii.  Our home in Hawaii where skin isn’t hiding for most of the year under long pants.  Lauren lives in shorts, small skirts, and bathing suits most of the year.  The pain of this year won’t end when we fly away from Seattle.  Maybe it’s not meant to.  

Dr. Douglas Hawkins  

Lauren appears out of the pan for the time, but we’re into the fire today.  In-patient chemo.  Our favorite oncologist bartender (Dr. Doug Hawkins) has mixed up the VDC cocktail: vincristine, doxorubicin, and cyclophosphamide.  She’s on a 75% dose of dexamethasone, a strong steroid more potent than prednisone that works with the efficiency of chemotherapy drugs and as an anti-nausea drug to boot.  Bonus, but it makes Lauren a bit like Linda Blair in the Exorcist—spinning head, colorful vocab, and all.  But there’s less demonic projectile green pea soup with the dex because anti-nausea means less barfing.  Less barfing is always good.

After the surgery on the 11th, Lauren was plagued with about 10 days of intermittent fever.  They never did figure it out.  Temperatures in the red zone: 101, 103, 102, 103, 103.  Mostly 103.something.  A helpful nurse printed out all of the fevers for me in a seven day stretch, even graphing it.  Two pages of single-spaced, tiny line item temperatures.  A line graph with sharp peaking spikes resembling a needle reading seismograph chart of the San Andreas Fault.  The nurse was so proud of her work.  I, on the other hand, felt dizzy and really, really scared.  The doctors futzed around with different thoughts about the fevers.  We tried Tylenol, the incentive spirometer, cold compresses, ice packs under the arms, chanting.  See, this could be a HUGE problem after chemo when Lauren’s immune system tanks.  And this scenario just happened to one of Lauren’s best friends here, also a cancer patient.  She had an infection, but was taking IV antibiotics.  Then her ANC dropped and this sweet young gal ended up in the emergency room with a temperature of 106.4.  She was transferred to the ICU and was treated successfully, but she could have died.  Freaks me out.  She could have been my own child.  She could have been any of the kids we know and love here.  Just… BOOM.   I went that night and stood awhile with her mom after Lauren was asleep.  We were already in the SCCA cancer wing; the nurses there were also worried about our friend.  They kept a special eye on Lauren while I was out.  When I returned to our hospital room, I couldn’t sleep.  I stayed vigil another hour or so until the sun peeked through the blinds.  Things seem less desperate in the daylight hours.

We were delayed with chemo.  The docs wouldn’t start it without a better understanding of the fevers.  But Lauren’s fever, while scary and dangerous, sure wasn’t 106.4.  The docs referred us to the infectious diseases team.  They introduced themselves to Lauren this way: “We’re like the people on that TV show ‘House,’ but we’re nicer.”  Ha!  After all the questions and tests and “team consultations” they decided it might be the antibiotic (Piperacillin.  Can you believe?) and a drug-related fever.  Sure enough, they stopped it and the fever disappeared.  Still not 100% sure.  We’re hoping that she doesn’t have a low-level infection.  If so, we’ll likely spike a fever when her ANC drops to zero.  Fingers crossed about so many things.

We’re glad we’re back on chemo, albeit 3 plus weeks late.  It’s such a strange thing for which to be glad—checking into the hospital, filling the body with toxic chemicals, lying around all day waiting.  Waiting to throw up… or not.  Waiting for visitors. Waiting for meds to kick in.  Waiting for time to pass.  Waiting for a nurse shift change.  Waiting for the day to wink its eyes closed.  And waiting for not a promise, but a mere possibility or hint of a cancer-free future.

It’s 11:05pm and I’ve missed Starbuck’s downstairs by 5 minutes flat.  I was going to meet my friend whose lovely daughter is no longer 106.4.  We were going to go catch a late night coffee or tea, sit across from each other and commiserate. She knows me better than some of my own relatives now because she knows so intimately what I’m going through.  We share a similar experience here as caretakers and cancer moms. It’s like we have a secret handshake now to a club no one wanted to join in the first place.  We missed our mini date because Lauren started to feel sick.

Best not to wait for nausea to become more than a whisper.  Headache often leads to hiccups, then tummy pain, and then the Pepto-Bismol pink emesis bucket.  Wet washcloths.  A sleepless night.  We have avoided all that Linda Blair ugliness this time.  Not sure if it was the IV Benadryl or a surprise visit from Ross, aka Nurse Beefcake, one of Lauren’s favorite (and few) male nurses.


So, I’ve missed late night caffeine with my friend.  I’ve got a fresh but not-as-fun-to-drink-alone 12-pack of Coke Zero here in the hospital room.  For now I’ll stick with that popular theme: Waiting for chemo to start again in a half hour.  Waiting to read a bit of vampire fluff.  Because I’m waiting for the two Advil I just swallowed to do their job.  Waiting for a new day tomorrow.  Waiting and wondering…