Sunday, November 23, 2014

The Daily Grateful

Friday, November 14, 2014

Still Halloween around these parts

I’m confused lately about what year we're in.  This is typically a January/February problem, not a November one.  Though the struggle is whether it’s 2014 or 2015 so at least I’m rounding to the correct wrong year.  I think this says a lot about what I think about 2014 and also probably something about how irrelevant a concept time has become since my mom died.  But instead of making it a big, lofty whoop and giving myself shit for not being present, I’m going to pretend Halloween is still newsworthy.  Two weeks ago is pretty much the present moment anyway.

If ebola can make a comeback then I can still post about Halloween.

Dan and I went all out—entirely for our own benefit.  There were three small handfuls of kids who came trick-or-treating before 6pm and then not a one.  So basically we, the childless couple on the corner, looked a little fucking nuts and a little fucking sad. It left me feeling strangely disappointed and because I couldn’t recognize that or get in touch with what I was feeling, I picked a fight. 

Not my most reasonable moment.  But it's in the past.

Look how fun we made it!  (There was a flashing light in the window!)  (We really looked crazy!)

The problem now is that we don't feel like putting anything away.

They look so orphaned.  (Note the leaf issue...)

Plus, Dan is still so impressed with his dummy.

My dad would be so proud.

I have a feeling it will be rocking a Christmas hat soon.
And prouder still.

He looks like he wants to stay there year-round.

He doesn't care about time either...

I smell a Spew mascot.

Wednesday, November 12, 2014

Futile Tool

You guys, I need a leaf blower manufacturer to sponsor my blog.  I’ll start every entry with a clip of me saying, “Brought to you by Futile Tools.  When you want to make a lot of noise and get nowhere, do it right with Futile Tools.”

Who are the leading names in leaf blowers anyway?  Whoever you are, I love you.  I don’t think you have a futile product.  I think mine—the leaf blower I currently have—is a futile tool.  So  maybe you should give me one of yours (preferably one with a vacuum attachment) and if it makes me a happier person than mine does (which I’m sure it will; did I mention mine is a plug-in?), then I will write delightful things about it.  And who doesn’t want delightful things written about their shit?  I think I just invented advertising.  (Or selling out.)

Also, dear leaf blower manufacture/supplier, I promise I won’t say shit again.  Or make any blowjob jokes, though it’s so temping.  You’ll note that I haven’t made even one blowjob joke and I’m already multiple sentences into this shit.

I’ll be a model spokesperson.

Does John Deer make blowers? One I can ride on?  If nobody has invented the ride-on blower, they should either invent that (because oh my gawd, what fun!) or hire me to keep giving them fantastic ideas.  It would need to have a vacuum though so it would feel like Pac-Man and not like I’m in a snow globe of blowing leaves that might cut open my eyeball.  Do they make ride-on lawnmowers with vacuums that eat the leaves?  This is a thing already, isn’t it?  I didn’t just invent a Leaf Pac-Man Machine, did I?  How sad for me.

But I think I did highlight why I need corporate leaf blower, lawn mower or home care sponsorship.  I don’t even know what tools are out there!  I can write about anything with extreme enthusiasm and utter naïveté!

Sample ad disguised as just anotha post: “Ham-mer.  Whoa.  Readers, put your rocks on a stick away and get yourself one of these things stat!  No more rocking in those fussy screws!”

It’s like having someone who is dying of thirst discover Poland Spring and then hawk it! "This clear stuff is amazing.  It literally saved my life!" (Poland Spring People, let’s talk.)

I would absolutely fawn over on a functioning leaf blower.  FAWN!  Because one that doesn’t function—one that blows the leaves the opposite, eye-ball cutting way, because the air bazooka doesn’t work properly—really makes you appreciate the good leaf blowers in life…even when you don’t have one yet.

There are more leaves every day, you guys.  Every day!  More!  There are leaves covering the driveway, leaves on the lawn, leaves in the gardens, the gutters, on the porch, on the steps to the mailbox.   I love raking. (Rake Makers—who makes this shit?—you hear me?)  But I just need to know the truth: am I supposed to do nothing but rake for the entire fall?  Is this what home owning is actually about?  Am I supposed to rake for many, many hours, many, many times a week or else feel guilt for being the one whose leaves are blowing into everyone else’s clean-as-a whistle-and-still-somehow-green lawns?  Just be straight with me.  Is endless raking just a part of tending to a home that nobody ever talks about because it’s so painful?  Like “ripping” during childbirth.  (I haven’t had a baby but I know about ripping.  Also, I have a friend who described labor to me as being stabbed in the stomach and electrocuted at the same time.  She is one of my favorite people.  And also the reason I employ 17 forms of birth control when using public toilets.)

Leaf Blower People, I’m talking to you!  (To clarify, I’m talking to potential sponsors.  Not you, Leaf Blowing Enthusiasts.  We’ll have our day, LBEs, as soon as LBPs hook a sister up.) Leaf Blower People, hook a sister up!  If you send it same-day shipping, I’ll tell people!  I’ll tell and you’ll seem so nice!

Plus, you’ll help preserve my self-esteem.  I used to love falling leaves and now I look at them as daunting tree petals of failure.  And why do I not remember my parents cleaning up all these leaves?  Other than my dad doing the driveway before it rained (per my mom’s request; a neuroses I have inherited—gawd forbid those driveway leaves get wet and tracked through the house), I can’t remember much in the way of leaf control.  It’s not like my parents were out there all fall blowing and raking and sweeping all these leaves.  Or were they? Was I just deaf to the sound of futile tools?

Is this just another of many awakenings I’ve had and will continue to have as I live in this house that they took care of for all those years?  Things were happening all around me—leaves fell, piles were amassed and managed—and I never even noticed.

Kind of makes me feel like a futile tool.

Tuesday, September 9, 2014

Dark, no moon

I am looking up at the house from the bottom of the yard. It's dark, no moon. The house is bright. My mom was in her room. I was bringing her meds, food, climbing onto the bed next to her and hugging her. She wore her white nightgown. So soft.

In the casket, in her sweater, her arm still felt like her arm. I remember telling Cherie this, she was afraid. I put my face into the casket, to my mama's arm and I nuzzled her for the last time.  Her arm felt like her arm!

It's dark, no moon.

Saturday, February 1, 2014

The good people… (Thanks, Pete Seeger.)

"Pete Seeger once said, 'I'm not sure my participation in a benefit cause, march, or demonstration has been effective, but I can tell you one thing, being involved in these kinds of issues means that you're involved with the good people with the live hearts, live eyes, and live heads.'" -Harry Chapin 

Pete Seeger died on Monday.  When I read it on my Facebook feed the next morning in bed, my sunken “Oh…” caused Dan to roll over and ask what happened.  My sadness was for him, my sweet Pete Seeger-loving husband.

I searched for the gentlest way to say it. 

“What?” he asked again, some urgency to his voice now.

A similar thing happened six months ago.  I gasped and Dan had said, “Pete Seeger?”

I’d shaken my head---“No, bud.  It’s Toshi.”

This time it was Pete Seeger.  And Dan and I lay in bed a little longer hugging because of it.

I didn’t really know my husband until he brought me to Pete Seeger’s 90th birthday concert at Madison Square Garden in 2009.  We’d been together eight years by then.

My husband is a shy man.   He’s not just introverted, although he’s that as well.  I heard a writer say once that she sits inside all day writing alone, occasionally looking out at her husband who works their farm all day alone, and understands that they need the same things in life.  In this way, they are together.   In this way, Dan and I are together.

But when we do venture out to be around others, he is shyer than I am.  It’s a trait that has caused me some frustration over the years.  More than once I’ve had to wait for him to drink enough wine in order to dance with me at a wedding.  When a waiter comes to our table, h/she often directs all questions my way due to Dan’s deference to me (which often takes the form of a lack of eye contact).  He is not rude or remotely unkind, my husband.  He is shy.  Though there have been times when his shyness has felt to me like withdrawal from the world, cynicism even, and it troubled me. (I’ll also mention here that he is the funniest person I know…and almost everyone I know is funny.)

I remember warning my sisters and friends that they wouldn’t really have a sense of Dan until the third or fourth time they were around him. 

Apparently, it took me eight years.

I knew long before that concert that Dan was not just a fan of Pete Seeger’s music, but that he had also been moved powerfully by what Pete Seeger had done with it.  What Pete Seeger had used his banjo to do.  But I can’t pretend I got it, especially at first.  Dan would play “Beans in My Ears” and “Rye Whiskey” on long car rides and I’d beg him to “Please turn off the friggin’ Raffi!”

He’d say, “Do you hear how he’s saying Alby Jay?” and explain how Seeger was singing about Lyndon Johnson (LBJ) not listening to anti-war protestors and I was like, “That’s awesome, now can we please listen to my music?” and then I’d put on Ani DiFranco. 

I was 20 (when we started dating) and didn’t know that because of Pete Seeger there was Ani DiFranco. I’ve never considered myself sophisticated or even knowledgeable about music.  To a desert island I’d bring a Jackson Five best-of and the soundtrack to A Chorus Line.  Despite my poor taste, I can listen to and enjoy almost anything.

But when Dan first introduced me to Pete Seeger, I didn’t get it. I didn’t get the sound.  This wasn’t the case with all folk music.  Ani’s ferocious striking of her guitar strings had been helping me work through anger since I was a teenager.  The sound of Joni Mitchell's voice had helped me figure out what was below that anger.

“Good Night, Irene”?  Nothing.  

But Pete Seeger meant something to Dan.  When we talked about our funerals, he told me he wanted “Well May The World Go” played at his.  So I tried to understand.

He told me how Pete cleaned up the Hudson River.  How he’d been blacklisted and the FBI kept a file on him.  How he still stood on street corners in upstate New York where he lived holding anti-war signs.  I still preferred listening to The Sound of Music soundtrack (movie version of course), but I loved how much Dan loved Pete Seeger.

I loved how much he loved teaching me about the music.  He told me about Lead Belly and The Weavers and Woody Guthrie.  I asked which songs Pete wrote, which ones he sang, trying to get the facts straight.  And Dan told me about  “Turn, Turn, Turn” (“From the Forrest Gump soundtrack?” I asked) but then explained that it wasn’t just about who wrote what song.  That folk singers, Pete Seeger especially, just wanted the music to be played or sung, ideally in the company of plenty of others who would leave their mark or verse on a piece of music. 

By then I understood that Pete Seeger was what real heroes are made of and I loved Dan for having such a worthy one.  For Christmas I surprised him with a banjo and Pete Seeger’s instructional book on how to play.  In the car, Dan would take my hand to his heart after I’d surprise him by chiming in with an “English is Kuh-ray-zee” or sing about how “my get up and go has got up and went.”

I had warmed to it, but I still didn’t understand how Pete Seeger’s music--how the happy sound of a banjo--had been such a powerful tool. 

That is, until Pete Seeger’s 90th birthday concert.  This is when I got it.  When I saw my husband--my shy Dan, whose hands I’ve had to hold around my waist in order to keep him from escaping a hug he’d felt I’d held too long in public--not just clapping, not just dancing, but singing along loudly to the songs performed by Pete Seeger and the 51 other musicians who played that night. Dan’s eyes were like a child’s when Pete Seeger came out.  I was in my seat watching the stage when I turned and saw that my Dan was already up on his feet singing.  I looked around, wanting to say to someone, “Are you seeing this?  He doesn’t do this.” 

But of course everyone was doing it. These were Pete’s instructions.  That we stand up, that we sing along, harmonize.  That we participate.  

Dan barely sat during the whole four and a half hour concert.  He pointed everyone out to me, my education continuing. “That’s Arlo.   That’s Joan Baez.  That’s Richie Havens---he opened Woodstock.”  My angry (well, “Not Angry Anymore”) Ani DiFranco sang “There’s a Hole in the Bucket” with Kris Kristofferson. And I saw that the night wasn’t about any one musician’s performance--not even Pete Seeger’s.   It—he--was about the music and the message.  While perhaps not a sloop, something incredible was built by all the voices that came together during that concert.  And I finally understood Pete Seeger’s power.

Prior to this, I had struggled to reconcile Pete Seeger’s kind voice and demeanor, the merry sound of his banjo, with the sort of subversive reputation Dan told me he had earned.  But that night I understood that it wasn’t just the lyrics and subjects of the songs he sang that had gained him that reputation.  His music brought people together and said it was okay—essential--to hope and reach for change and justice. Pete Seeger was dangerous because he believed in people.  Strap a banjo around his neck, and this belief spread.  I saw it happen all around me that night. 

And I saw that my Dan’s shyness was protecting--or maybe just disguising--his own dangerous, hopeful heart.  The man singing beside me was no cynic.  I learned that for certain that night.  He believes in a kind of hope that many are too scared to let themselves feel.  He believes in people.  He’s shy and he’s as brave as they get.

When I told Dan about Pete dying, he was stunned, numb.  I think he thought at first that I was going to tell him that something had happened to Katie and so the loss of his hero, which is of course different than the worsening illness of a family member who lives downstairs, seemed a momentary relief of sorts.  And then as Pete Seeger music played through the house for the rest of the day, the sad reality hit my Dan.  He didn’t take the day to be alone though.  Instead he made an apple crisp for our family, a turkey sandwich for my niece’s lunchbox. 

Throughout much of our relationship, Dan had talked about wanting to write Pete Seeger a letter--a thank you--but he hadn’t let himself do it and was worried he would miss his chance.  For his birthday a couple of years ago I went to a print shop and had a pad of stationary made up.  Around the border ran the words “This Machine Surrounds Hate and Forces it Surrender”--the same words that circled Pete Seeger’s banjo. I set the paper at his desk with a pen and a stamped envelope addressed to a P.O. Box for Pete Seeger I had found online.  Dan sent Pete Seeger his thank you.

This is mine.

I have heroes.  Dan is one.   I believe he could change the world.  That he does it every day.

Thank you, Pete Seeger, for showing me that. 

Monday, January 27, 2014

We finally took our Christmas tree down.

Dan was here.

When I first started this entry, it began with the admission that the tree was still up, that it might stay up through March or even later because I was passed the point of feeling bad or even embarrassed about it.

I am working hard to figure out what truly deserves priority in life right now, and as a pretty plastic tree loitering in the living room hardly seems threatening, packing it away slid down the list.
The only reason the job crept back up---and eventually got done---is because I wanted to make room for some of the toys Sav and Eva received for Christmas.
The girls are up there on the priority list.
So too is not breaking an ankle on the wood handle of a motherfucking toy duck lying in the middle of the room.
So we finally undecorated. 
With the tree down and their sheets clean, the house was ready for Katie, Gary and the kiddos, who just spent 10 days up at Bec’s house in NH, to return.
Return home.  At first I wrote that the house was ready for them to return home.
It’s how I feel but I was shy to write it…to impose it on them.
Home is a concept that every one of us living in this house is uncertain of right now.  Sometimes I say to Dan, “I want to go home,” and he knows I’m talking about the Exeter, NH apartment where we lived for the last seven years---the first seven years of our marriage, the final seven of my 12 years in NH.  He knows when I say it that I am longing for the protection and safety of the smallness of our life there.   It was sanctuary and cave.  Home is where you hide?
But of course I am home now in RI.  I don’t mean that this where we live.  Although true, I don’t entirely feel that we actually live here yet.  But I am back in the town where I grew up.  In the very house.  I am home in that way.  In that “you can never go home again” way. 
Though, especially with Katie here, it does sometimes feel like we both somehow did go home again.  Like when we let each other know when one of us is going to shower so that neither of us suffers the cold water that results when both the upstairs and downstairs showers are in use. We’re more polite about it now, but as kids we employed a similar system known as,  “I call first shower!”  (As the youngest of my sisters, it would have only ever been with Katie, arguably the most benevolent of my four overlords, that I would have ever even tried calling first shower with any expectation of it being honored.) 
If home is where you heart is, I’m there.  Though there have been times when Dan’s three days a week working in NH (the other days he works from here…from home) had me feeling like my home is doing so much driving---and both of us are so tired---that we can’t settle in to each other the way we used to.  Fortunately, we’ve found our way home to each other more lately.
And of course, if home is where your mom is, I’m as there as I’ll ever again get to be.  This feels especially so when I’m sitting at her spot at the kitchen table or outside among her flowers where she planted her seeds and hands and self into the earth. This is a far more positive outlook than what “home is where your mom is” used to evoke in me, which was a heavy acceptance that I’d never again be home.  
I’ll also add that having released my dad’s ashes into the river here, a sense of him--- steady as the current that I imagine lapping him gently back to our shore each day---contributes to an earthly, almost tribal sense of home at this spot on the northwestern bank of the Sakonnet River.  Though, as far as I know, there is no proverb that says, Home Is Where Your Release Your Dad’s Biodegradable Ash Package.  (But if my dad were here, he’d put that on a sign for me to hang in the kitchen.)
When we all got back to the house after spending almost a week in Boston during Katie’s surgery and recovery, Gary said it felt good to be home and then asked if I minded him saying that.  I didn’t.  I’m glad that’s how it feels.  It, being the house, I thought then. 
But then Katie called me from NH when Sav, who was having a great time up there, announced out of the blue that she was feeling homesick.  Katie said she asked Sav what she was feeling, wondering if she’d mention Ohio or her bedroom here in RI.  Wondering what “homesick” means to a four-year-old who has lived quite a few places in her short life with all the travel they’ve had to do during my parents’ illnesses and now her mom’s.
“I miss Lola and Dan,” she told Katie.
We were homesick for them too.
(Though, let’s be real, the break was nice. I’m sure Katie and Gary would say the same.)
 I woke up the morning they were to return so excited to see them.  I wanted Sav to come up to my room and sit on my bed and pepper me with questions until she stumped me.  Why can’t little girls be mommies yet?  Why are you an auntie and not a mommy?  Why does mommy have cancer in her belly? 
I wanted to see Eva shaking her little diapered butt to the Super Why theme song in the morning and (dare I say good morning to her) to then point her finger at me and say “NO!”  (I look forward to Eva being old enough for a morning cup of coffee.) 
I missed them.  I loved the break and needed it to recover, but I missed them.
As we put the Christmas decorations away, Dan pushed the little red button on the foot and a half tall singing Bing Crosby doll that we bought years ago and said,“It’s his last song of the season.”
I remembered how when we brought it out at the beginning of December, Sav and Eva kept pushing the button until they’d hear the horns start for Bing’s “Santa Claus Is Coming to Town” and then dance around him until the song stopped and it was time to push the button again.  Then they wanted us to play more Christmas music and Sav said to Dan, “Will you dance with me like we’re married?”  As Katie and Gary caught a rare moment alone in another room, we played one of Eva’s favorites songs, a song Katie sings to her at bedtime.  And with her little head on my shoulder and Sav’s on Dan’s, the four of us slow danced in the living room by light of the tree to Silent Night.
I had almost forgotten that night.  I had almost forgotten that the holidays had even happened.  The weeks leading up to Katie’s surgery on January 3 were a terrifying blur of trips to the ER, Katie losing her ability to walk, fighting for appointments, and the growing possibility that she might not make it to surgery.  Then once it was a go, it was a blur of last-minute scans, blood tests and arranging.  Then it was surgery and lack of pain control during recovery.  Eventually she was walking again and then finally discharged.
As is my style, I waited until the worst of it was over---Katie was through surgery--- and promptly got so sick that I bruised, possibly fractured, my ribs from over two weeks of hard, unrelenting coughing.  The cough and rib pain (the latter of which is still with me) coupled with the mess of a post-holidays house had me wondering why we’d even bothered to decorate this year.  (It’s true that I hate holiday clean-up and have this thought every year, but this year it was especially bad.)  And then Dan pushed Bing’s button and I remembered not just that night of dancing with the girls, but all the other sweet moments and gifts that came with having these guys here over the holidays.  Dan had as much fun hiding that Elf on the Shelf as Savvy did finding it.  (That little guy hung from ceilings, stared down at Sav from atop the toilet paper roll and at one point found himself trapped inside a lidded glass jar, though only the adults knew that the little sign taped to his hands said, “HELP!”)  And there were so many “Why is Eva quiet?” panics that ended with us finding her playing with the straw dolls and little ceramic carolers I’d set up in a wintry scene beneath the tree.  While I did discover quite a few headless townspeople---“Something happened in that village,” Dan said, his voice faking a quiver---finding Eva playing there was particularly gratifying.
When I’d first put up the tree, Katie had told me that one of her clearest and favorite holiday memories from childhood was playing with the scene my mom put up each year beneath the tree.  She told me how she remembered playing with those straw dolls---some of the same ones I’d just positioned to be sledding or crossing the bridge over the frozen pond---and having an awareness of her own happiness, a sense of the warmth of the house and our family inside it…a sense of home.
That's when I told Gary, after he’d expressed some concern, not to worry about Eva breaking anything.
"It's meant to be played with," I said.
I always wonder how Sav and Eva will remember this time.  What images and emotions will be etched on their brains to be pieced together later.  I am hopeful that if not the dancing or playing by the light of the tree, that there might be some memory of a sense of home.  A home---if not the house, then to Dan’s and my heart---where they will  know they can always return.
And should they forget, perhaps I’ll show them the decapitated villagers to trigger their happy memories…

Or make a sign for their kitchen: Home is where they’re headless.

Monday, September 30, 2013

Not much here. What's new with you?

The other night my sister Katie’s little girls watched the moon rise over the river.

“Mooooon!” said Eva, who’s two, to four-year-old Savannah.

The two of them stood against the deck railing, their backs and heads of blond curls to the house and all of us, watching the moon together.

“Isn’t it such a beautiful night?” Sav asked Eva.

“Mooooon!” she said again.


Before this, Katie had told me to come and look at the moon too.

Lately, we’ve also been catching sunrises.

“Red sky,” Eva will say when she sits with us in those earliest hours before the sun is up.

Then, once it pops and and the gold light streaming in is so fierce it makes us squint, we close the curtains so Katie can get some sleep on the couch.  She likes sleeping on the couch, just like my mom did.   She finds more comfort on her side.  Same as my mom.  Same couch even, in my parents’ family room.  The house didn’t sell and Dan and I are living here now, along with Katie, her husband Gary and her girls.

Katie has cancer.

I should have said that first.  

But I didn’t want to say it, the same way I didn’t want to know it.  Until the biopsy results told us that it was indeed ovarian cancer, I still half-expected to hear it was a rare parasite that had bedazzled her liver and pelvic cavity.  

The cancer is what I’m here to tell you though.  That Katie, middle of our five, only blond, the kid who hung with the lizards on family vacations, beautiful absent-minded genius, has cancer.  This is the blog entry where I tell you of this absurdity.  How after my mom was diagnosed with lung cancer and died nine months later, and then my dad was diagnosed with a brain tumor and died a year after that, now my sister has been diagnosed with ovarian cancer, stage IIIC.  She missed stage IV because it’s on her liver, not in it.

I miss the good ol’ days when just my parents were dead.  

When my dad was brain damaged after his surgery, that joke was “the good ol’ days when just mom was dead.”

In July, Katie and her family came from Ohio to visit and do some house-hunting between NH and RI.  In August, Katie went to the ER because she felt a pain in her liver that was getting worse.  Since then it’s been a blur of scans and blood tests and biopsies.  It’s been watching my sister get sick, her abdomen swell so much and so suddenly, that the pants that buttoned around her small waist one night, couldn’t even be zipped by morning.  It’s been watching her get so tired that her eyes roll shut in a room full of chaos, opening only briefly when Eva, disapproving of mommy’s naps, screams in her face.  It’s been seeing her in so much pain that she could only pace the room because sitting offered no comfort.  

But there are also those sunrises.  The talks we haven’t had time for in years.  Magic afternoons where I watched Katie decorate for Halloween with her girls.  (We took a minute that day to hug and cry in my mom’s kitchen, both of us knowing that she was decorating early because she might be too weak by Halloween).  Plenty of laughs. In the beginning we talked to Katie’s tumors as if they were her pregnant belly.  “How are those wittle masses today?”  I’m thinking of playing Mozart for them so that they’re musically inclined when they finally come out.

They are coming out, just not as soon as we’d hoped.  We don’t do simple, removable “lumps” in this family apparently; it’s on her ovaries, uterus, diaphragm, omentum, on the liver but not in it.  Because it’s a fast-growing cancer that’s already spread, the surgeon said he didn’t want to put her through a massive surgery---hysterectomy, any cancered-up organs out---without having the best chance of getting a ton of it out.  So the plan is three to four months of chemo (Katie hits the bar every Wednesday) to shrink the cancer followed by the surgery.

“In time for Christmas,” Katie said.  

Maybe they’ll play Jingle Bell Rock in the OR.

They call the surgery “debulking.”  At the end, Katie’s insides won’t be quite so debulky. They say this particular cancer grows like moss over the outside of the organs, so they’ll remove what they have to and scrape it off where they can.  If all goes well with chemo and surgery---which it mother-fucking will---Katie will then have nine more weeks of chemo.  Though then it will be injected directly into her abdomen, like they’re spraying weed killer.

There’s nothing to do but make cancer jokes at this point.  We call it “the cansa.”  My sister Cherie cracks us all up with a bit she does where she pretends she’s an old complaining biddy at the grocery store.

 “Yeah, Katie’s got the cansa now.  First my mom, gawd rest her soul.  Then my dad with the brain.  Now Katie with the cansa too.  We can’t get a break.  Now can I get that cheese sliced extra thin, sweetie?”

We all cry laughing whenever she does it.  The bit was born when my mom was sick (little did Cherie know how much material she’d have to work with) and my mom would laugh and laugh until she coughed.  

We all feel bad when we have to tell you guys about Katie. It feels like we’re playing a joke on you or something.  You (lovely you) ask us how we’re doing---in a particularly gentle way that means “without your dead parents”---and then we have to explain about Katie.  (Wouldn’t it be weirder if we didn’t?  I tried that and it seemed worse to not say.)    Sometimes when I say the words, “Yeah, um, my sister was actually just diagnosed with cancer,” I have to fight back a giggle because I can’t believe I’m saying those words and I’m so uncomfortable with making you uncomfortable.  I recognize giggling is the most inappropriate response ever.  Please forgive me. I don’t think it’s funny that my sister has ovarian cancer.  I just feel like I’m an actor and someone is filming us for candid camera.  It just surely can’t be real, this scenario where I’m telling someone, who I probably haven’t seen since my dad’s funeral (and before that, my mom’s) that now my sister has cancer too.

She’s 37 by the way.

Ovarian cancer usually occurs in menopausal or post-menopausal women.  It’s why when the surgeon first saw Katie (who was less symptomatic at the start) and had only seen an ultrasound (not the MRI, CT or biopsy that followed), he said, “I don’t think it’s cancer.  You’re gonna to be fine. You need me to say it again?  You’re gonna be fine.”

It’s a line we revisit for laughs.  I’ll take Savannah’s alligator hand puppet and chomp its jaws in Katie’s face, “You need me to say it again?  You’re gonna be fine.”

Which of course she is.  Because that’s the way this story ends.  As Katie says, there’s no other choice.  No other way for this to go.  

“My girls need me,” she says.

So there it is. Her mind is made up.

And while the extent of Katie’s pain and fatigue and swelling was terrifying just in how fast it came on, there have been improvements since last week.  Much of the swelling has gone down.  Her pants fit again.  They’ve been able to manage her pain with meds.  The steroid they give her with chemo helps her keep an appetite and gives her a couple of days of reprieve from the fatigue that the cancer, chemo and pain meds bring on.  She looks and feels better than she did a couple of weeks ago.  We’ve decided that it means the chemo is working.  

She also had a blood transfusion which seems to have helped the fatigue some and should also alleviate the shortness of breath.  Katie goes to a lab for blood work every Monday to make sure she’s healthy enough for chemo.  Last week the oncologist’s office called less than an hour after the draw because her hemoglobin levels were dangerously low and they wanted her to get the transfusion as soon as possible.  Hemoglobin is a molecule in your blood cells that contains iron and carries oxygen.  They think her anemia is something that was going on before the cancer or the chemo, though both make it worse.  So last Tuesday they hooked her up to a packet of blood and I picked up margherita pizza with garlic from Fellini’s and we ate good, Providence pizza while a line of red blood ran down the hose and into her vein.  Her hemoglobin is still low though, so this week they’ll give her iron through an IV.  

It’s going to be a big week.  The iron infusion is Thursday.  On Wednesday, I’ll be bringing Katie to the hospital at 5:30am so she can have a port implanted.  The port will sit under her skin near her collarbone and connect via a catheter to a vein in her chest.  They’ll deliver her chemo this way, which will mean less needle sticks for the six to nine weeks she has left of neoadjuvant (pre-surgery) chemo.  After the port procedure Wednesday morning, she’ll head over for her regularly scheduled chemo.

Today she’ll do her blood work and we’ll meet with the oncologist.  They won’t do any CAT Scans until she’s further into treatment so we can’t know for sure if the chemo is working (it is) or the tumors are shrinking (they are) until then.  There is a blood test they can do that might give some insight into whether or not the cancer is getting beaten back, but it’s hard to know if it would be an accurate marker this early into treatment.  More important though, Katie doesn’t want to hear the results of this blood test if it’s anything less than great news.  She doesn’t want to hear anything that could discourage her or take her from her current mindset that the chemo is working and she is kicking her cancer’s ass.

She told me I can find out but have to keep a poker face about it.  I’m not sure I can do it.  And I’m not sure I want to know either.  It’s one test and it’s only been three weeks of chemo.  As much as we all crave certainties and facts and proof during times like this, they are illusions.  Illness and life and death are about more than science.  If Katie feels like the chemo is working---and she does---then it is.  If she feels better than she did---and she does---then she is less sick than she was.  No matter what a blood test says.  

Also, every day is different.  We never know what she will be feeling. A blood test for a tumor marker can’t tell us that either.

There is so much more to say.  So much more that’s happened.  But I have to get ready for today’s appointment and want, more than anything, to thank everyone for all the kindness and support you’ve given Katie and all of us this last month (and years).  And  I know Katie wants to be thanking all of you right now as well.  

So, thank you for the loving thoughts and emails and texts and prayers you’ve sent.  Thank you for the healing crystals and protective necklaces.  Thank you for the sunflowers and orchids and dahlias from your gardens. Thank you for the soups and lasagnas and meatballs and calzones and fruit baskets and Edible Arrangements and brownies and sundaes and wine (THANK YOU FOR THE WINE!) you’ve all delivered or sent with my sisters or left out on the porch.  Thank you for all the help and all the offers to help with the kiddos.  Thank you for bringing them fall clothes and coloring books and crayons and an awesome kitchen stocked with plastic foods for them to play with. Thank you for pulling weeds and cutting down tree branches so the house doesn’t look creepy and haunted.  Thank you for picking up the trash bins and putting them back on the wall. Thank you for sending Katie sweet cards and pajamas and meditation CDs and books and candles and lotions.  Thank you to all my friends who I haven’t called or written back but love so much for checking in.  Thank you for all the love we feel from all of you.  We feel it so much.  And we’re so grateful.  I could just thank and thank and thank you.

And thank you for the sensitivity and understanding so many of you have shown with regard to Katie’s need for rest and why it’s a hard time for us to have visitors.  I know Katie feels bad when she knows that someone she loves is wanting to check in on her,  but needs a nap or wants to use the energy she has to play with her girls.  Thank you for your thoughtfulness and your understanding.  And I’m sorry to anyone who’s dropped by who I’ve not been able to spend time with because of the million tasks that need doing.  We’re just still finding our way in all of this.  Please know we’re so grateful for all the support and love.

I will try to get back here as often as I can because I know everyone is wondering how Katie is doing.  I promise I’ll do my best.  

Katie’s definitely doing her best.  She was always something special, but the cansa has really upped her game.  She’s all badass.  All grace.  

You need me to say it again?  She’s gonna be fine.