new orleans

on set lists

nikkicuc Leave a comment

june 2012 itrIt still happens every time. Layer after layer I go through his things – It’s not a job that I dread, it just takes commitment and care, and often a lot of thought as to who to give things to, so  – chunks of time. Crazy, 21 months later and I’m still going through things.

Today it was the little shelf under my side table. Possibly the most constant piece in my bedroom, other than my bed. The place where magic happens apparently, but a story for another time – the side table story that is.

Always a stack of books, favorites or to be read, some have tattered, from a drop or two in the bathtub. Dogeared, filled with post-it’s paperclips and things of sorts. Photos, of memories past, placed for safe keeping while traveling away from home as a daily reminder of my people. Today I found three separate catalog pages, in three separate books, all featuring the same beach towels I’ve had my eye on for years. I like what I like.

And a set-list.

Most times I know what show they were from, who we were were with, what we were celebrating – we were always celebrating. They represent so much, a little slice of time, not unlike the photographs. They hold memories recalled in my body, thats the magic in the music, its a full body experience for most.

I’ve always been a sucker for a set-list.

It’s something about being a part of that quiet frenetic energy leading up to a show, writing the night out.  The moments before. It’s a privilege to me. I’ve always felt that. In the case of In The Red, I only knew the latter days, where rehearsals would be non-existent although intended, and set-lists would be compiled over days of emails and text messages – often with cheats and notes included – the fellas are all getting old. I recently went through some messages on Dean’s phone, and the majority of emails saved were exactly that. Mindfulness in creating an experience – making sure it was as big and as much fun as we could possibly fit in the room.

(It’s a quality I admire in people and believe to hold in myself: creating a vibe, ambiance, taking care of everyone and everything, with joy from love. little things, energy, details)

What a way to live.

Looking so forward to this week’s adventure in New Orleans, filled with sweet sounds, get downs, great friends and good vibes.  There’s a piece of my soul that is only fed with the music of that city. The horns, the heat and the slow steady vibration that you can feel in the streets, the undercurrent. Tradition, history, culture and new experiences. Something about that Crescent City that will hold my heart forever. The intention and energy behind the music, the easy attitude of the people, the smiles of the faces I see but once a year, front row, loving it all as big and full as I do, like we’ve been waiting for this week all year – because we have. Right there at the edge of the stage where if you tilt you head the right way, you might just catch a peek of that setlist taped to the floor by the mic.

We’ll be missing some of our regulars, for sure, but will carry on for you, and you newbies, we just can’t wait to bring you into our world! There is just no place like New Orleans, get ready to live a little piece of your heart down south. Laissez les bons temps rouler!

Thank God we have Jazz Fest…

nikkicuc 9 Comments

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(mid Dave Matthews set 1st Weekend. EPIC)

started this post last week –

Its been a crazy freakin’ upside side down and right side up again kind of week here in 08033. Superman is currently rocking out to Anders Obsborne in the other room, windows open, sun shining on him. Perfect Thursday evening -in preparation for the Lettuce show at The Blockley – he told the doctor the other day “music is my medicine” Making memories and laughing with your friends is what we ALL live for! He’s so right.

Music has been so much for us through our relationship – totally our common bond. It’s been so great to get out and about with our gang. “Thank God we have Jazz Fest.” and the days preceding and following it. The days we count down the days, and the days we recap it. Luck us, getting to Jazz Fest this year, lucky us! Sometimes you just need a care free soul filling weekend away in the sun, or in our case the driving pouring rain- to put it all in to perspective and remind you- life isn’t about passing the storm, it’s about dancing in the rain. Nothing better than gettin’ down with your friends!

Good thing too, because just after the most fun week ever – came the least fun week ever. (although I hear the Hurley’s pool party was pretty awesome!) Here you have it.

five radiation treatments

1 3 hour chemo sit

1 clinic visit with his radiologist

1 appointment with Dr/. Langer

1 emergency room visit

1 night stay in the hospital

1.7 liters of fluid drained from his right lung (and again 1.5 more)

1 chest xray

2 MRI’s

to fill you in:

with all this tests, we’ve found more cancer, in more places, but when Dr Langer is involved, there’s a plan. Superman’s in a pretty bad rough patch, there’s not been such good news this week, and he’s feeling really crappy. God willing, it’s going back uphill soon. We’ll be hanging on the porch this week, listening to music pretending we’re in New Orleans – if you’re in town, stop over! It’s a GAME ON! kind of week.

love and light,

xxN

Damn. That Was a Small Window

nikkicuc 11 Comments

soulrebels

Sometimes it seems as if we’ve become experts in seizing them moment, especially recently. What could easily be a highly emotionally charged predicament is a business for us now. We gather the information, analyze the situation, come up with a plan and execute it in the least invasive way possible. Dean’s drive and commitment to his family, his work his teams and his music have gotten him up and out on days where most of us would self medicate and waste the day away. When God gives us a window of time when we don’t have to react, we take it.

This was the case, two weeks ago, just after his last round of hard core chemo, side effects in full swing.  On a whim – well as far as he knows – we were swept away to New York, with the best of friends, to escape the recent news, and soothe our soul. He totally rallied, with a smile. It was a blink of an eye, our night at Brooklyn Bowl – The Soul Rebels, John Medeski,  laughter, dancing, and even a few strikes in the lanes. We’ve never been bowling together. Dean “can’t bowl” after his motorcycle mishap a lifetime ago. Dean cant bowl – ha! I think he ended up wining the game. Just another superpower he has under that cape. It was an awesome night, I might even venture to call it epic, we were all in agreement. There’s something magical about spending time with Dean, his passion for life is contagious, and it’s a true reminder of how we should all be living in the moment, sharing our hearts and spending more time with people we love, doing what we love.

(Oh – and Brooklyn Bowl – Holy Moly! That gang couldn’t have been more hospitable. If you ever get a chance to see a show there, do it! I think it might be one of our favorite music venues ever, second only to The Fillmore in SFC.)

So- the latest news. While the docs have been pleased with the results of this knock ‘em sock ‘em chemo cocktail he’s been withstanding for five or so months- there are a few tumors growing at a faster rate than we’d like, and a change is in order. We thought he’d get a break- maintenance chemo for a few weeks, but unfortunately that’s not the case. As I write this, he’s in recovery, post biopsy, to gather more molecular data. The sample will be sent across the miles, and we’ll wait (a few weeks) for the lab to report their findings. In the meantime, he’ll be on a new regimen, IV chemo every three weeks- a definite improvement over the 3 hour weekly sit he was withstanding for the last 30 weeks. On April 1st, he’ll begin seven weeks of radiation to his lugs, five days a week. Ugh. it will certainly prove to be a challenging Spring, but nonetheless, one filled with soccer games and family dinners, longer days, lots of music, magic, rebirth, and a quick hit of NOLA love late April.

In the meantime – we have a few fun things on our schedule and would love to see you out there with us!

Up for a party? Join us on Saturday March 16th at The Princeton in Avalon as Dean and some of the local fellas jam at the Kanen Keating- Wear Cancer Benefit. Kanen aka “Hurrikanen,” is a courageous, free spirited, full of love 5 year old boy from Cape May County who was diagnosed with cancer early this year. We know all to well what a long road it’ll be for little Kanen and his family and are honored to support this little guy in his fight.

Secondly, the For Pete’s Sake walk on March 24th. Unfortunately, we’ll be out of town this year, but this is an organization very close to our hearts. It’s an awesome day at CItizen’s Bank Park and the kids get to run the bases! If you want to join the fun, connect with Jessica, she is heading up the Tough Dawgs team again this year. For more on For Pete’s Sake, click here, you might recognize Superman in his plain clothes!

We’re also training for Broad Street Run, a wonderfilled ten miler through or favorite City of Brotherly Love. The girls are running with us this year, along with 20 or so of our best hometown posse. We seriously would be lost without this crew not to mention all the support we have showering us from coast to coast.  Dean has a race bib, we’ll see how he feels.  If you see him out there, hittin’ the streets – give hime a holler or a high five, and know it must be a very good day! Either way, we’ll run with him or for him, but it wouldn’t surprise me if he pulls it off again this year.

Ok- that’s my long winded story for today, and my therapy for the week. His surgeon just came out to report that they got what they needed, and he’s waking up slowly, Special Prayers and Blessings to the doctors and nurses here at Penn. Their care and passion for their work are unmatchable. And he’s awake. We are so blessed. xxN

My Upside Down World

nikkicuc Leave a comment

In Feburary 2010, at 44 years young, in the prime of my life and just after completing my first marathon, my life turned upside down.

Cancer.

Stage Four.

Shit.

“Living in the window” is a saying we have created to describe our lives between scans – our bright spots, in between the periodic check points, the chemo, the radiation, the traveling to other cities for treatment, the prescriptions, the paperwork, the lost time in CVS, the exhaustion, and the tears.

Looking “in the window” you’ll find our a-ha moments, our places of respite and recharge, our stories of love and adventure, soccer teams and late night shows.  That time “in the window” is our time to connect with those we love, when we have the energy, and can carve out the time, and just live, carefree, even if just for a moment.

Sometimes the space is defined by good news – which makes that slice of time is a celebration, sometimes it’s another challenge ahead. Either way, we try to keep our gaze forward, living a little bit BIGGER and BRIGHTER each day, and focusing on the stuff that really matters.

Stop in, see what were up to, discover some new music, connect with our resources, catch up on my treatment, follow our adventures and be INSPIRED  as we continue “LIVING IN THE WINDOW”