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.

Sisters.

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.