family

What Makes You Feel Alive?

nikkicuc 1 Comment

I was sorting through my google drive this morning, and came across some writing of Dean’s. There were so many lessons we learned through his suffering. So many practices we put into place to make the most of the time we had together. Always keeping things on the bright side. I would often fire questions off to him or give him homework assignments when I saw things looking down. Dean was a little dark if you let him slip. With time against usI felt it imperative to keep focused on what could make us most happy. Here’s a good one: a bit of his writing, and a bit of my edit. Sort of like a ghostwriter in the realest sense of the term. I hope it brings a smile to those who miss him most and gives everyone else a sense intention on this summer like hump day in New Jersey. 

What makes me feel alive?

(Ok so let’s do it different. Not sure sure how many times I’ve said that but Nikki gave me an assignment so let’s try it)

I feel alive when:

Dropping in and a backhand Indo barrel at Ulus (I guess it’s finding your edge…the limit…when you are pushing the being alive part)

Surviving the next set of scans

Seeing the sun, feeling the sun, being in the ocean facing your fears

To feel alive. Facing your fears and challenging them. Know your physical limits – however that’s not your limiting factor – you’re only limiting factor are your excuses.

Being in California:

Things are green here (California) I like that. You can grow things in your yard and eat them. I like that. This happens all year long. I like that. 

They have all three seasons in one day. Just be prepared. 

Sitting in the kitchen with Nikki and Hil while they talk, cook and laugh. That makes me feel alive. The little things, Bearing witness to the moments. 

Setting expectations: realistic expectations and prioritizing what is most important:

“Dads are supposed to be brave. Consider the things you want to pass on to your kids.Set a good example. Promote honesty and ask if you don’t understand. Be kind and be strong! (strong like bull) try and hear more than say more, try to feel more and Pray some too.  – I worry I wont be able to instill all the lessons I want instill in the girls. Life is fleeting. Make a list. Face that truth – create action around it. That makes me feel alive. Intentional living.”

Seizing the moment: 

“New break. Love seaside Cardiff by the sea. Today had it all. Little rippers Jersey style and John was getting Gianna and Fia in on some bombing rights. As I sat with Nick grabbing this little left on the corner of the channel with a perfect view of the girls ripping down the line working on their backhand. They probably had 5 years of East Coast experience in two days. Wish I had a Go-pro for me it was fantastic to experience for real. For my girls this will probably not be as memorable as some future trip.”

These are the literal – alive which is a good start – and certainly are actual as they are personal challenges that allow us to learn about ourselves and what we do. 

In the past few days, I’ve had several people ask when I will get back to teaching yoga. My response has been : I’m not ready. I have no words. My yoga has been life these days as it actually always is. The practice of Yoga (Asana) arms us with the tools we need to face our everyday challenges. The work we do on our mat, we take into our lives. 

What Makes You Feel Alive? A question I will often raise while keeping a room in the most difficult pose : the long warrior holds (for those of you have have often been in my class) rooting down through your right big toe mound, widening your foot and peeling your arch from the floor. Grounding the blade of your left foot behind you, energizing you quads, softening your knees, dropping your shoulders, lengthening your neck, while staring down your right middle finger and growing your arms by an inch or three.

Facing Adversity. Reminding ourselves what we’re up to. 

What Makes You Feel Alive? 

 

 

Monday, Monday…

nikkicuc 4 Comments

0b712aee4e58799c5702168fd62d7f66This one really struck me today. Nothing like a rainy Monday at a clean desk, after a full weekend of exactly what I love to get me in thinking. Plus my writing playlist is just rediculous. Actually I think it might’ve started sitting on Lea’s counter Thursday night, either way.

The New Year seems to have brought me a deeper sense of grounding and longer moments of “I think I just might be OK, I may survive this.” Although at times, it feels like new levels of grief, but in very short bursts, so that’s an improvement. It’s hard to fathom that a year and a half later this is all still unfolding.

Christmas was a process. A constant up and down, for all of us. We survived, had some magnificent surprises, and have a clearer picture of how to approach all that holiday stuff moving forward. I sent half the cards that I intended to this season, so if you didn’t get one, I either don’t know any part of your address by memory, or you are in the last third of the alphabet. That was something that went out the window with Dean’s diagnosis, the urgency and need to do everything “right” at Christmastime, and although it’s left a stack on my desk, it’s a welcomed change for sure.

The last few months I’ve learned to know when it’s real grief versus getting stuck. I can say with surety, when it’s real, its real. I’m just trying to figure out what to take from those moments, other than the energy moving through my body. Maybe that’s what it is to feel someone’s presence. It’s been the biggest gift of my yoga practice lately, an intuitive tunnel – straight to the other side. Crazy really.

I understand what’s nurturing feel good, versus escape – which I can see would be a very slippery slope to most, it’s an easily blurred line. I am blessed to be surrounded with a family of people, who let me go, and reel me back in. It’s something Dean was very very good at. Letting me flutter – a much appreciated super power.

Fairytale Land is great, the running and traveling, front row, late nights, silly summer outside dinners, beach days way past sundown, and yoga for days on end. Everything that I do to FEEL alive. I love that world, and I am a champion of justification, so there’s that. But Reality has been pretty OK lately too. This weekend in particular – lots of down time, kid time, cleaning out, dinner, music, gathering our beautiful teachers, breaking bread and a wonderfully “normalish” sunday complete with meatballs, football, good people and the Golden Globes in bed with my shorties. Glimpses of possibility and a familiar ease to life – a balance between my many worlds. home.

I’ve had the space to connect and reconnect with so many, slowly, easing my way back in to the swing of things. Back to the more familiar me. Thank you for your love and patience. Really truly, I don’t know what I would do without you. It’s been an incredible journey.

Heading into this year with my feet on the ground a bit. It feels good. My big focus for the first quarter will be developing the studio, our Fishtown Community and an excellence of balance with the girls (which right now feels like some concentrated travel time, somewhere sunny, sometime soon) more writing and more reading, replacing the heater and finishing the dining room. Funny list, right? It seems I am moving forward with a greater understanding that something new is being born, for all of us – and it feels nice.

Looking forward to many good days to come, and truly wishing you all a New Year filled with magic. May even your rainy days be bright. x

stop the madness! (after all, you can’t take it with you)

Asidenikkicuc 2 Comments

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As I wake here on the other side of the earth, on a different day than I know, to the sound of the pounding surf and the sweet smell of frangipani, it’s hard to fathom you not here. Here with us, on the other side of the world – with the girls, here to celebrate Christmas in a place we knew we’d return. I imagined walking the beach and getting to say goodbye one last time, to the place that brought so much magic to our lives. To a place that opened our eyes to what is possible in ones life if we only allowed ourselves to dream bigger than the moon and farther than the stars -to the people that showed us how to envision and achieve what seemed only a fairy tale, and are now here to hold the space as we miss you together.

It’s hard to fight the tears this morning, maybe its fatigue after 24 hours travel, maybe its that feeling of the universe being so thin here that I can literally feel you with us, maybe it’s Christmas and traditions we skipped as to not have to face the missing. Maybe I’m just leaking. Its a funny thing, forging along and traveling as we do – the amazing privilege of seeing the world, experiencing new places and connecting with old friends, I feel so blessed, so lucky we have the means and the desires to do so, yet at times, it seems so unfair not having you here.

Today, while walking on the beach at sunrise, it struck me what a great gift it is to love and be loved. Possibly the greatest gift of all as I see it, and the single most important reason to celebrate and be with the people closest to you heart this time of year, Christmas.

I feel blessed to have my heart cracked open and overflowing for so many years. To have played in the sun and danced in the rain, travelled the world and created the most amazingly comfortable and welcoming home. There is magic in our walls. Magic of hopes and dreams, of love and loss, laughter and music, children playing, friends gathering and especially Christmas Spirit.  I remember well a conversation I had with David, whom we are visiting here in Australia. He recognized what a special thing we had, and his words still ring in my heart, “most people don’t have what you have within these four walls, most people will never know.”

You see it’s so easy to get caught up in all that we feel is missing, that we don’t have, that we think we need, or desire. It’s easy to get caught up in the presents, and the wrapping and the baking and the cards, the to-do list and the expectations. Oh the expectations, they’re a killer.  Im not sure when it all became clear, or even if it fully has, but I know that I have realized this truth. The most important gifts do not come in beautifully wrapped packages, or shiny baubles or perfectly set dinner tables. The most important gift is love.

We had it all, because we had love. True give and take love, inspiring love, love that cared for and nurtured, love that took risks and played safe when needed. Love that set me free to be me, yet was grounding and protective. Love that overflowed to our children and included those around us, in our closest circles, and sometimes even strangers on the street.  Love that created and upheld traditions, like trimming the tree and making pizzles, filling the advent calendar and late night wrapping over bottles and bottles of wine. Love that looked over my shoulder at the gifts so carefully chosen, with a genuine interest and joy at how we expressed OUR love. Love that lit up the tree in tiny white lights, and made sure to capture every moment on film as to not miss a thing.

Suddenly, I am feeling homesick, on the other side of the world – or something that feels like that. Suddenly I am feeling great loss. A perfect example of no matter where you go there you are. Suddenly I am feeling we should have stayed home longer and left after Christmas Day, keeping busy and getting lost in the hustle and bustle, but at least sharing traditions in our home, even if without you there. I am in one of the most exquisite places in the world, surrounded by friends and my beautiful family yet I am feeling somewhat alone. I’ve skipped the traditions -this year- in an effort not to feel, yet here I am, away from it all with the time and space to feel it so hard. You see God works in mysterious ways, giving us exactly what we need when we need it most and sometimes forcing us to feel in the most delicate and backhanded way.

It’s taken me all morning to get these words out, it gets so heavy, and the tears so big, I have to take breaks here and there, get distracted, check out – shut it down – but in it all, as difficult as it seems, I feel love. A love that will take me back to the beach today, to lay in the sun and feel the warmth on my body, al love that will make a list and head out to buy presents for the girls and bake cookies to leave for Santa, even in the Australian summer heat. A love that will remind me to cherish the moments together with this gang, and to follow our bliss and realize our dreams with the gentleness and care that I need.

To all of you at home, we are well, and we miss you, but we are doing our work here down under. The work of our grieving and healing, creating memories and magic in a place that is a bit more gentle than the east coast winter, with fewer distractions and places to be. A place that keeps our closest people, our “other siblings” who have been holding space and supporting us from afar through it all.  A place we had planned to be as a family this year, God willing.  We will think of you on Christmas Eve drinking too much wine, and on New Years Day strutting down Broad Street.  We will miss you at breakfast, and will make up for it when we get home for sure. We’ll be “with you in spirit” as we hold you in our hearts and know your love.

Form the other side of the world, we wish you all a Blessed Christmas Season and a New Year filled with opportunity and amazing dreams fulfilled. Take time, and care to love bigger this year, not with presents but with your heart, for we never know our path and we never know our time, and -the stuff – well, you certainly cant take it all with you.

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

Follow The Sun

nikkicuc 12 Comments

broad street

If you ever thought the road ahead was too difficult or too bumpy, or you weren’t fast enough, or strong enough, didn’t train hard enough, didn’t have the right shoes, or the right clothes or that you didn’t even care if you finished anyhow, this story is for you.

This is a story of determination, spirit, togetherness, love, community and God Speed. Really truly, the kind of God Speed that no human being can ever muster, or will to happen, the kind that is bigger than you.

The Broad Street Run, a ten mile race through our City of Brotherly Love, was quickly approaching.  We had committed this year once again to run with our “Game ON!” crew. Our Haddonfield gang ran this race for Dean the year he was diagnosed. Over the past three years, that group has grown to 21 or 23 depending on the day, who train together, text incessantly, quit drinking for 30 days prior to the race, and literally carry each other through to the finish in all ways. Some do it for time, some for fun, some just to lift Dean up and take a stab at something they never imagined they could do, and he has inspired them, myself included.

Training had been on the back burner in our house, with Dean’s back problems, and his seemingly never ending treatment schedule of radiation and chemo, 5 days a week. Add to that our busy travel schedule (yay!) and the girls sports – there was just no time. He bought new runners (thank you soccer families for all the coach gifts at the end of the season!) based on the fact that they looked fast, laced them up and ran exactly once. My own training schedule non existent, with the exception of trail run at Whistler #ambassadorlove and one “long” 3.4 mile run with Sophia. The kids, having double practices some days felt they were OK, although having never clocked more than 5 miles had no idea what they were in store for.  But in our family it’s “go big or go home” so we couldn’t quit.

Earlier this week, while in New Orleans, Dean started having acute pain in his right side. I kept him down only a few moments amongst the thrill of Jazz Fest but became a literal knife in his side the day we got home.  By mid-week I had called his friends with serious concern for his well being. His spirit took a nose dive and his light seemed to dim.  He put his foot down on Thursday. He wasn’t running. He wasn’t even going to watch.

Then something happened.

On Saturday, still limping in pain, and on very little sleep, he decided he’d START and FINISH the race with us, because “those were the best two parts.” We didn’t talk about the middle, nobody cared how he got from point a to point b, he’s got stage four cancer for pete’s sake! We joked about the subway being free, and made sure he had cab fare. really truly.

He started with us, sent us to run ahead at mile 2 and we crossed the finish as a family. He ran all ten miles, on his own, every step a gift.  He said it was like meditation. Truly a miracle, truly other worldly, and a testament to determination, pride, a bigger family and his commitment to LIFE.

I asked the girls to write a few words about their experience, without consulting each other their message is the same. The day was life changing.  I think they can speak for all.

I’ll let you read and enjoy.

And pssst….the next time you want to quit, dig deep – keep it going. Your spirit will thank you again and again and you might just inspire someone to go the extra mile as well.

Today was a life changing day!

My mom Nicole, my sister Sophia, my dad Dean, and myself ran Broad Street. It’s a 10 mile race all through Philadelphia!  Me, not as prepared as I should of been, was amped up at 6:00am to run! I started by pulling myself out of bed and getting dressed. The rush of the morning breeze woke me up! We drove to the Hurley’s house all decked out in our red socks and Game On shirts, some photos were taken, the off to Philly it was!

The subway was a rush! hundreds of people crammed into the subway car, the small cramped space was getting to me. Smiles, laughter, and jokes were exchanged between the Game on crew! The chill of walking out of the subway station was a thrill. Walking to our corral was interesting. Crowded, loud, stretching runners some wearing  ridiculous outfits! We all walked to the bathrooms which were nasty – lets not get into detail about that. As we were warming up the national anthem was sung. As soon as that beautiful voice hit the earth the sun started gleaming on us! We started waking into the street, the beginning jitters came to me. We were all together talking and taking pictures – suddenly this sketchy guy walked up to us and was asking to get through claiming to try and get to his son to start with him. His black backpack made him even more sketchy – never mind that.  The race started and we couldn’t get in because we were in a side street. we finally got fed into the crowd 20-30 minutes later.

Running was a thrill,as a family was even better! We were running and running! As we gradually made it to each mile mark, I knew I would be getting even more tired. I pushed and pushed! This was my goal – to cross that finish line. Running to the beat of my music was good but listening to all the cheers and live music made me gleam and smile as bright as the sun!

Each mile I would tell myself you just keep getting closer and closer! The five mile mark was the best! I was half way there!! A little past the 8 mile mark the lululemon station was cheering with signs and saying come on girls you can do it!  We got so many cheers, high fives, and go girls. We kept on pushing no matter what! Near the end it started getting really crowded and loud – that made my adrenalin pump even more! Just before the nine mile mark my dad calls me and says ‘what’s up?’ I say ‘just running, what about you?’ ‘I’m at the lulu lemon station ill see you at the finish line!’ (me asking if it’s ok to run ahead) goes with a beaming smile to the finish line! I hear screaming, and cheering- for me…the rest of the Game On crew was cheering and so proud!

As I crossed the finish line I screamed in joy! Waiting for my mom and my sister to come I was still racing with adrenalin. We got our medals and I put it on like I was being honored for a special Medal of Honor. We grabbed the food bags and some water and walked to meet up with the rest of the gang. I got so many “I’m so proud of you and your so amazing!” it was awesome.

We made a plan to get a boot over the fence when daddy came close! Mrs. Stolarick saw my dad and Mr. Jacovini helped me over! Everyone was screaming to me, “you’re going the wrong way!” I ran to my dad with my arms wide open ready to embrace his hug! We all grabbed hands and finished the race then slowly crept over to the crowd. We took our adventure back to the car. We walked and walked. Each time we would go into a lot we would say “oh it’s this one…nope it’s the next one” we kept going! We finally made it, a 2.9 mile walk back to the car and my aching muscles were killing me. I decided to lay down on the warm ground. everyone followed, the soreness of my muscles told me to stay down and not move but I knew I had to get up, stretch, and congratulate everyone once again. A police officer came over and told us we had to leave. The day wasn’t over but my muscles told me that the rest of the day I would rest!

Today is a day I will remember for the rest of my life!!

 

 

Broad Street Run By: Sophia Cucinotta

May 5, 2013 was at life changing day for me an my family! That day we all ran the Broad Street Run! It was a 10 mile race all through Philadelphia.  We needed to wake up at 6 a.m. to get ready. The morning birds and the rush of my family woke me up. At the exact moment I got out of my bed, I saw my calendar and noticed it had said, May 5, 2013 Broad Street Run!  I was overjoyed! I got to experience the race for my first time! We drove our car to the Phillies stadium, then took the subway to the starting line.

When we got there we all went to the bathroom and then headed to our line. When the first pop gun when off I was jumping for joy! We ended up having to wait 26 more minutes until the people started to move. Then the second pop gun wen’t off and everybody started running! I gave my mom and dad a big kiss, and I was off!

All down the streets there were people cheering us all on! I started off running with my dad, but then I ran with my mom and sister! When we were running it felt amazing! At mile 3 I pitched my long sleeve and sweatshirt. At mile 8, there was the Lululemon Cheer Squad! I saw so many people I knew cheering me on! right from then I was pushing myself to finish strong!  When I saw the finish line I was so happy! Right when I crossed the line I hugged my mom and my sister! I had run 10 miles!

We met up with my moms friends, and waited for my dad to come by. When we saw him Mr. Jacovini and Mr. Stolarick  helped my mom, sister, and I over the fence to finish the race again with my dad! I sprinted to my dad and squeezed him so hard! We all held hangs and finished the race.

I will never forget that day! That is one of the most important days in my life! I am so thankful that I got to run it with my friends and family! And I am aspecally proud of my dad, he ran it! He has cancer, and is going through radiation and treatment!  So dad if you are reading this, I love you very much, keep on fighting and…… GAME ON!

The Fourth Nail…

Asidenikkicuc Leave a comment

nails

I think I found out what the fourth nail is for. (a placeholder nail that Eva gave me) Big scary shit over the last few weeks- the possibility that my NSCLC may have spread my spinal fluid. Apparently 50% of Lung Cancer patients end up with this as a secondary cancer – as if living with once cancer isn’t enough. (since resolved, phew! but read on.)

I’m pretty good with odds like that. I can usually beat 50%. Being the grandson of two gamblers has caused me to focus on odds numbers a little differently in terms of what they mean to me.

If in fact I do have the cancer cells in my spinal fluid they say that I have about 4 to 6 weeks to live. That’s way too short and I’m not digging the odds. Since were talking odds- here’s another crazy statistic. My particular type of cancer carries a <1% survuval rate 5 years out. It’s going to be a motherfucker of a number to beat but I will. It’s also why we don’t look at numbers.

And other nail: a 13th brain tumor to radiate. It’s been a while since I’ve had to go to Clevelad for Gamma Knife, and we’ve been so blesed. But, alas, the little mother f@#$&* is right there in the dead center of my brain. Thankfully, it doesn’t seem to be bothering anything, however it is more weight to carry around.

I’ve tried to steer clear of talking about prognosis and numbers- and Corey’s been very helpful in keeping the focus on beating the odds. However, they do creep in and can be very helpful in understanding what’s important- like really important in life.

I just keep in mind what needs to be done today and prioritize things differently, like remembering to drop off $14 at the school so Gianna get the shirt that she needs, that stuff is important. Second on the list is stopping at the hardware store so I can fix my wife’s bedside light, it needs some love.

Really important.

Just the other day, after more that 4 weeks of waiting, we got the news we were hoping for – no cancer cells in the spinal fluid, just one brain tumor! One brain tumor! Awesome! – Its pretty much like standing at the craps table With Sergio and Dante aAnd a table full of family and friends, and we just rolled the hard 8.

Wow, how my perspective has changed.

We’ll keep everyone posted as to when the prcedure will be scheduled. It looks as if we can stay here in Philly this time, which is great. Should take a good bit of a Friday but, home and back in action over the weekend.

A big huge thanks you all of our amazing doctors and family and most recently the Dean Randazzo Cancer Foundation (more on that here) who consistently bend over backwards to make sure I can keep living and doing. (literally and figuartively) I have the very best team around. (more on nails here)

Game On!

My Upside Down World

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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”