05 February 2009

Rolling on the Drip and a Possible Viking Funeral

7 a.m, Mon, Feb 2:
Caroline's curly head appears bedside. "Oh, mommy, are you SO nervous today? I am sooo nervous!" She scurries up and down the hallway then jumps into Paulie's bed with the same questions. At first, I'm trying figure out who let the MF cat out of the bag that I was starting chemo today. But, after a few more words -- "Phil," "shadow," and "will someone PLEASE just turn on the news already!" -- I realize her neurosis is Ground Hog Day-related and has nothing at all to do with chemo. Thankfully.

I hear the kids shuffling down the stairs. Caroline is drilling Paulie on the profound importance of the shadow sighting this morning. "Do you want spring or not, Paulie? It could be six more weeks of this messy, messy winter."

"Spring, Caroline! I already told you that twice," Paulie says, getting exasperated.

We all are. And the wintry mix outside isn't helping.

I find myself hoping against hope that the little Punxsutawney rodent won't see his shadow and will be forced to keep his prickly little head above ground with the rest of us who don't have the luxury of hibernating the next six weeks.

10: 30 a.m: Dana 10/Infusion
Judy, my chemo nurse, gingerly places the IV into the vein on my left hand and strings a bag of clear fluid over the top of my stand. She explains that I need some hydration before I can handle the "one-two punch" of the chemo, the Adriamycin-Cytoxan, the A/C, the poison.

I can already feel myself ballooning up like one of those gluttonous little shits from "Charlie the Chocolate Factory" as the sea-salty solution seeps into my bloodstream.

Judy explains to James and me and that it's going to be about 30 minutes: Do we want to watch TV? No. Grab a snack from the kitchen? No. Some coffee or tea? No. Water or juice? No. Can I re-adjust your recliner? No, I'm fine. Or would you prefer a bed? We're ok, thanks. Are you sure I can't put the TV on for you?

I'm having a spot of deja-vu from my nuclear medicine scan last week. Daytime television: Bonnie Hunt + Divorce Court = NOT good for the tumor. And I'm really wishing I hadn't reread DFW's essay on the cruise ship industry last month right about now. We have our laptops, iPhones, holistic cancer books and some mags. We're good.

As Judy rechecks my tubes and IVs, I notice James' checking out Judy from head to toe. "I'll be back in a half," she trills, and heads off to the nurse's station to start mixing my toxic stew.

I know what is coming next.

James leans over and whispers, "So, where do you think Judy is from?"

James and I have this strange ability, one that comes and goes like a foreign language with inebriation. For whatever reason, we can identify the migrations of provincial people among neighborhoods, inner cities and the Greater Boston area. Or sometimes not at all. Anyway, it's a game we play.

JAMES: I'm going with West Roxbury or Marshfield.

Good guesses, I concur.

ME: I'll say either Canton or Norwood, or maybe Needham, but just as a dark horse.

He shakes his head, somewhat impressed.

He starts reading some emails. I start reading a fact sheet on the potential side effects of A/C chemo: May cause leukemia (bitchen); heart failure (hmmm); spontaneous, potentially-fatal rupturing of spleen (holy shit!!!)

Just then, we're distracted by a 20-ish brown-haired woman with a wee nose ring. She's skulking around our curtained cubby, looking lost and a bit unstable on her feet.

"Mind if I sit down," she asks?

"NO! We don't mind!" We both bust out; I quickly kick out a rolling stool, a trick I learned from James on day one.

She settles onto the stool without missing a beat (or fainting) and extends her hand to me. "I'm Elle," she breathes.

ME: Hi, I'm Kate. Are you ok?
ELLE: Yes, I'm the Chaplain here. I just wanted to see if you wanted to talk.
ME: About?
ELLE: About that (points to my IV)
ME: Chemo?
(Shakes head, smiling at me).
ME: Do you know something that we don't know? Is my spleen about to fatally rupture?
ELLE: Whaaat?

Aside: Elle sort of reminds me of a woman from graduate school who used to write poems about how God lived in the space between her radius and ulna.

ELLE: (kicking off with a leading question) So, do you guys have any religious beliefs?

James and I admit we're both lapsed Catholics, but very much believe in God. James goes back to tapping on his Blackberry; I start yapping about how I want to provide a spiritual and moral compass for my children but can't in good faith go back to....then Judy mercifully returns with her three vials of red death.

ELLE: Kate, would you like me to sit with you through your treatment this morning?
ME: We're all set, Elle, thanks, though. If we need last rites or anything, we'll page you.

Elle smiles, nods, and shuffles along.

JAMES: That girl is going to be up.your.ass. everytime you're here.

I appoint James as "Chaplain bouncer" just in case. I love talking to people -- all kinds of people -- but there is a time and place to have certain conversations and this was neither the time nor the place. I decided Elle was well meaning but hadn't yet mastered that art of reading people. Sounds familiar.


JUDY: ( gloving up) "Who was that, the social worker?
ME: No, the Chaplain.
JUDY: Oh, that's a nice service, isn't it?

Yes. Of course. And there's that word "service" again. Now I am deep into DFW territory with no way out. I'm really wishing I hadn't reread that damn essay. Now I have no choice but to address it here:

Aside II: The essay is called "A Supposedly Fun Thing I'll Never do Again." It was about the instant gratification of the luxury cruise industry but I've seen enough parallels lately to be concerned. For instance, in a scene in his essay, DFW insists on carrying his own duffel bag over the polite protests of a porter only to feel guilty about it later realizing the porter probably faced a real shitstorm over it. Throughout the course of the trip, DFW begins to realize that despite all of the protocol geared toward his pleasure, all he could feel was despair. These people couldn't care less about his comfort or even if he fell overboard. They were just doing their jobs.

Major Disclaimer:DFW also suffered from suicidal depression and took his own life a few months ago. We won't go down this road. I will say, though, that I've concluded the polar opposite experience exists here at DF - their compassion is legit; their aim is true. They want to help and heal. And they're certainly not expecting tips or props (or deportation on a bad day).

For instance...

Flashback to Jan 30. Nuclear Medicine scan

A man named "Oz" (short for Oswald) and an IV nurse Wendy are trying to help me unhinge Lefty from my bra that was jammed on a piece of thread in my sweater. I couldn't get my left arm out myself without my IV needle reaming out all of the veins in my forearm. This is an unpleasant, somewhat embarrassing scenario for all of us, but they're insisting on helping me. Finally, I'm able dislodge the thread from the sweater (and all of us from this medical menage-a-trois) and, even though my arm bleeds a bit, it's clear we're all relieved.

But that was nothing compared to what happened next!

I'd been pleasantly surprised to learn I could listen to my iPod during my 40 minute PET scan -- so much so, I'd even passed on the Xanax (I'd also learned the scanner was open-ended and less likely to cause a complete claustrophobic meltdown). But then Oz dropped a bomb: I had to hold my arms over my head and couldn't fiddle with the iPod -- at all -- during the screening. I had to remain completely still. What? Just a few days prior, I'd cleaned up my old playlists and had nothing prepared.

"WHAT," I said to Oz? "Do you know how much SHIT I have on this thing? You should have that 'no changing songs' item on the prep list. It should be right up there with the 'no food or drink 12 hours beforehand.'" I was probably delirious from my fasting, but I was still panicked about being unleashed into a musical wilderness of sorts with Lord knows what kind of lyrical baggage: Jeff Buckley, Nick Drake, and Good God -- Kidzbop!! Oz looked at me, not with pity but understanding, as he set me into the scanner, pushing me off onto some half-assed Viking funeral, my arms bound in gnarled headphones over my head.

Then he flashed me the a peace sign and stepped out of the room to radiate my blood vessels.

Thankfully the iPod gods were somewhat with me:

Playlist: Songs for a PET Scan:

"What's a Sweetheart Like you Doing in a Dump Like This" - Bob Dylan ( Talk to me, Bob)
"I Just Want to be OK Today - Ingrid Michaelson (me too, woman)
"Columbia" - Oasis (Gotta love Oasis. They have the perfect answer for those of us who struggle daily with the question 'How are you feeling': "I can't tell you the way I feel because the way I feel is oh so new to me."
"This is Love" - Goerge Harrison "Little things that will change you forever
may appear from way out of the blue Making fools of everybody who don't understand
This is love." (W0w)
"The Further I Slide" - Badly Drawn Boy

Needless to day, I survived it and got a new playlist to boot. On the way out, Oz hands me a card that says I've had radiation today -- just in case I should wander into a high security area and find myself surrounded my armored guards. Dude, you're nuclear.

Flashforward to 1:30, Feb 2 Dana 10/Infusion

JUDY: (dismantling my A/C chemo apparatus) So, Kathryn, you'll be peeing orange for the rest of the day.

KATE: That's nothing compared to my radioactive urine from last week.

JUDY: (laughs) So, do you guys have a long ride home today?

JAMES: No, just about 20 minutes.

* It's Go time *

ME: Hey, Jude (yes, I called her hey Jude) Where do you live?

JUDY: Norwood, born and raised. I still live there. All my kids went to school there etc.

Ding ding ding.

James and I make brief eye contact and I'm thinking that I should’ve made it more interesting. My stairway runner should certainly be installed this weekend. I picture Caroline and Paulie having a ribbon-cutting ceremony at the stop of the steps for Vito, who will finally be able to make it all the way to the top of the steps without backsliding on his belly.

Next installment: We're off to meet with the social worker who is going to teach us how to go against every fiber of our being and tell our kids the truth about what's going on.


Anonymous said...

Kate...hope you are feeling as well as you write. Not sure that is the case but you sound great.

I will be curious to hear the advice from the SWs at DF. If there are hand outs can you grab a few for your-friend-who-happens-to-be-a-therapist? I am planning on parlaying this experience to my own practice. Hope that works for you. =) As Dr. Nic always says, "I can make this about me in 5 seconds."

I continue to think about you, lefty, vito, James, Caroline and Paulie.

One week down, right? Baby-steps.

KT said...

One week down, KJ. Talent and wit fully intact. Wishing you luck with the kid conversations. Remember, they're more resiliant than you think. Proud of you, girl - hang in there!

Anonymous said...

I know you don't me but I am hooked on your blog, you are a great writer! I am the person the wrote the other day saying I was at DFCI a few month's ago. I could not believe you guessed Judy was from Norwood, I am impressed! She's
nice (but cheri lyns better:)
The nose ring person is new...
Hang in, one day at time :)

Anonymous said...

I don't know you, but I am completely addicted to your blog. It is so well-written and funny and meaningful. I check everyday for updates and find myself thinking about you in the middle of the day (I wonder if Kate is feeling okay from the 1-2 punch.) You have a wonderful attitude and such a funny disposition. Hang in there. Lots of people are thinking about you and praying for you.

Anonymous said...

KJ--Norwood huh? Or as we townies (actually I'm the carpetbagger only BJ and the kids and his Mom are technically townies) Nahwood...God's Country so you must be in good hands...I think about you everyday!!! xoxo Mama G.

mark rowlette said...

Kate you are a frickin amazing writer I now have a scheduled timeslot each day to read your mind, as it were. Maybe I should get on this facebook thing everyone keeps talking about.

hope they had something in a mullet today.

Mark R

Roving Lemon said...

Love the chaplain story...there's always one. If you're lucky, only one. And nice job winning Hometown Rummy.

One treatment down. Thinking of you lots.

Love from N, D & B

Diana said...

I'm thinking Dana Farber should post your blog on their site. It would be great inspiration for anyone going through what you are right now. Stay Strong, my Fucker.

Anonymous said...

I'm with Mark R., I end my day looking for or reading an updated blog from you. I hope/know you'll call me if you need me, however I think of you everyday and want to know how you are feeling, so your blog is now part of my everyday. And yes, amazing fucking (or frickin w/the irish accent) writer you are.

I love the dialogue between Caroline and Paulie, can totally hear it.. However you decide to handle it with them, they will know it's coming from love, they adore you both so much and they are great, vocal kids who will talk about what they are feeling and anything else that comes to mind... the dump ...Obama's plane... Phil.. Just as Nana Rie is to you, so you will be to Caroline and Paulie.

Everyday Kate, everyday... all my love and prayers..


Anonymous said...

Your blog is incredible...I read/check for updates everyday. You are constantly on my mind....Love the chaplain story. I can't believe you pegged the nurse is from norwood. Always here for you...Love, Tracy O.

Anonymous said...

We don't know each other at all, but I keep checking your blog daily for updates as if you were one of my closest friends. I totally admire your courage, strength and humor during this whole thing.

Good luck with all your treatments, all your talks with your kids, and everything else along this shitty journey, which will undoubtedly have a NED ending. Please know that along with all your family and friends, there are people who don't even know you cheering for you and keeping you in their thoughts everyday.

Now go and kick some cancer ass!!!

Anonymous said...

Although you don't know me, I also check in every day to see how you are doing. I so admire you and wish that I could deal with just average everyday life situations with half the grace, dignity and humor with which you are facing cancer. You are a role model to me in ways that you will never know. Feel well and know that you have many, many people rooting for you.

Matt O'Malley said...

So sorry to have heard about the news, but your grit, strength, and determination will beat this. You are a warrior. You, and this blog, are in inspiration to all.
Know that a kid from Rozzie (who could be spotted as such from a mile away) counts you among his heroes.

matt o'm
your cousins' cousin

Dr. Nic said...

Hi Kate,
I laughed out loud at Jamie's comment "That girl is going to be up.your.ass" - thats all you need to have the Chaplain up yer arse !!!

You are amazing Kate ! One down, three to go and then onto stage two. Keep it real my friend.

Love you

lpd said...

Get out and enjoy some vitamin D -- clinical term for "sunshine" -- this weekend, mama. Spring is just around the corner, bringing better days and NED ahead. Love, love, love you.

(PS...please ask my cousin about her chemo + DFW experience. Freaky coincidence as only she can tell)

Anonymous said...

Kate -Great blog, your writing is incredible. Henry Weffing would be proud!! You truly are an inspiration. Love PG

Bean Down Under said...

KJ - fantastic job with week one! As KT said the kids will be more resilient than you think. Keep up the strength.

Anonymous said...

You my dear, are a very gifted writer. Your story has made me cry and laugh. You have earned this "stranger friends" respect 100x ova sista.

Seriously, know that you have people (that don't really know you) in your corner praying and pulling for you.

You'll be doin' cartwheels when this is all over.

Hang inthere, K?

Paula said...

Hey KJ...

hope you are feeling as well today as you did when you wrote this.... Hope all goes well with the kids... you know that if they have inherited 1/2 the strength and humor that you have shown that they will do well with this ... It is already obvious that they will have plenty of love and support to help them through this scary time...

Just so you know... Jojo just listed herself a "retired catholic" at the DF... aside from being very applicable i thought it very humorous...

She starts the chemo cocktail Friday... I am trying to encourage her to go out and have a fuck chemotini... but you know...she'd rather stick with the vodka

Love Ya girl...