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.