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the love shack, it’s a little old place where…

nikkicuc 1 Comment

paddleout

I love this little beach house.  skateboards in one corner, guitars in another, and the surf boards…all the seasons favorites within arms reach – sun drenched rooms and bleach white towels, breezes blowing through open windows. This is what we remember in the winter months, this is what gets us through the snow and more recently, the treatments and the hospital stays. This is our place of respite, and of healing and of so so much family togetherness. For ten years we’ve summered in our little love shack, too small for overnight guests and just enough togetherness to create tolerance for everyones nuances and force us to keep to somewhat simple living, at least by our particular standards. It is here we have created an all to short lifetime of memories and it is here where we heal – by the sea, under the summer sun.

If you asked me for one word to describe the last three and a half years of my life, I would probably say “remarkable”, yet I haven’t been able to put the words onto paper until now.

I thank God for that weekend at the beach. I fought for that weekend, I fought all week long for that weekend, and when the doctors gave up and walked away, I fought even harder. I knew I owed him one last moment with the salt air on his face. And so it was, a gloomy weekend, but one filled with family and friends. There was a peaceful energy and it felt complete. We had a magical moment as a family at Waverly Beach on our way off the island that Monday evening. It was so foggy you could hardly see Atlantic City only miles in the distance.

The next days were sort of a living wake.  Our friends and our family sat vigil, never leaving our side, except in shifts to sleep. We drank beer, played music, laughed and cried. Dean really got to BE WITH everyone then. It was a tremendously surreal experience and he was completely surrounded by love those last days. This year, July 4th we saw a different kind of independence, a gut wrenching 24 hours that tested every stitch of our being yet was peaceful and “right” and very very holy.  He passed quietly with the girls and I by his side on that hot muggy day. It seems fitting, Independence Day, although not something I think I can ever get used to.

I want to acknowledge our friends and family who are by our side endlessly, forever and ever.  I don’t know what we did to deserve a circle of people like you. It is a remarkable showing of how amazing it is to stand for one another. Our friendships with each of your run so so deep, and without you the sun doesn’t shine.  The outpouring of support has been tremendous, really.

To all our music makers, late night dancers and friends along the way – you have lifted us higher than you can imagine. You too are our respite. Coincidentally, or not, the six words I heard loud and clear at the cemetery in that summer heat, “If I don’t dance I’ll die”. Pretty much sums up how I am feeling.  We did a lot of getting lost in the music over past few years, and it was so good.  I’ll miss him most then, late night dancing. That’s my thin spot, that’s where I feel.

So – this is where we stand – healing and loving, and missing him daily, but allowing ourselves to be ok if we’re ok, and to miss when we’re not. It’s a daily practice, not unlike the yoga, ebbs and flows, heart expanding and contracting.  I’m finding the key is to keep open, to connect with others and deepen our relationships with ourselves and those around us. To surround ourselves with those who elevate us and to pay it forward, simply because it feels good to give back after needing for so long.

We’re looking forward to a fall FILLED with goodness, adventure and continued peace.  Much love. NDG&S

hey- this wasn’t in the brochure!

nikkicuc 7 Comments

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It’s been a long several days here in the window.
not exactly how we planned on starting our summer vacation.

One thing this horrible disease has given us over the last few years is a perspective on what’s important to us individually and as a family. Time by the water is IT for us and it’s a hard expectation to drop, that well get another summer at the beach, life as normal. Surfing, sailing, clamming in Chappy, it all seems pretty difficult right now.

Dean is fighting off some nasty pneumonia this week – not want you want to be doing the first week of summer vacation. We’re in good hands here at Penn, the best our city of brotherly love has to offer. That said – it’s been a week of first experiences too -ambulance rides, extended hospital stays and trying to navigate the waters of the next several weeks. The girls have been transitioning from school to summer with a brief stop at soccer camp for G. Their sailing season has started and what is typically a challenging week under normal circumstances, has proven to be even more difficult with the two of us grounded here in Philly, held hostage by IV antibiotics, shortness of breath and recycled air. Thank goodness for family and friends who know just what you need before you even do – thanks everyone for the Animo deliveries, 5 star takeout, fresh baked cookies, soccer camp runs, sailing help and prayers. Fortunately, Superman is feeling relatively well, considering. It’s incredible to look at the scans of Dean’s lungs, and see the war going on in there. It’s hard to figure how he’s even getting any oxygen, and how theres no fever and no coughing. Just another super power, his ability to put mind over matter. It’s a lesson we could all take from Dean’s fight, how keeping strong in your mind and your intention. It’s proof that our thoughts can carry a shit ton more weight than we think.

So thats where we are at 4:44 on Wednesday morning – with the INTENTION of getting well enough to bust out of here and get back to the beach, toes in the sand with the waves crashing in – ok we live in New Jersey – so maybe waves rippling in. We’re about to head into what we refer to here as the season of “summer flats” where you stand by watching the swell forecast with the hopes of catching that storm that brings SOMETHING rideable your way. Not ideal for the big boys, but perfect for the kids and for the stand up paddles. We’ll sit at Waverly Beach and watch all the girls goof off in the water, create those special bonds with their summertime friends and practice their cartwheels. We’ll rest, and recuperate while we live in the window of our very favorite season at home.

We hope you’ll do something memorable this summer too- take some time off, get your own feet in the sand. Life goes by quick, and kids grow up fast. Stop and smell the roses, live a little, love bigger, and those dreams? those goals? they’re happening now. LIFE is happening now. Grab it, chase it and create the life you want to live, don’t wait! DO IT NOW DO IT NOW DO IT NOW.

does anyone have a flashlight? these windows are hard to find!

nikkicuc 2 Comments

deanrevs

OK – trying to catch up on the writing, bear with my LONG post – its really multiple posts, but I’m not good at making the time to write lately. #summerresolution

It’s been a constant flurry of visitors, cookies, band practice, fresh fruit, porch beers, take out, surprise packages and lots of tea this week-while we we’re hunkered down recouping after last week’s turn of events- although we did sneak out for a Memorial Day BBQ of epic proportions – thanks Spiv, et al.

Dean is definitely creeping back to feeling human and actually able to stand on the sidelines again.  Our team of doctors and friends has been amazing and we are so so blessed – everyone keeping so positive and really understanding what’s best for Dean and what’s most important to us going forward. We couldn’t ask for better care. Really.

They’ve just finished up radiation to his spine, hip and brain – 8 weeks of radiation 5 days a week –  to relieve his pain, and hopefully build enough strength to get back to life as somewhat usual. Another new normal. Chemo started back up for the next six months, we’ll commute from the beach once a week.  Really really rocky road and he’s feeling super crappy.  We decided time off from work was best, and with him not able to drive just now, it means I’m off too. We both hate not working, but alas, Dean has to sit in the passenger seat – and coach my driving, delightful, truly. It’s hard not to work, and I can appreciate the frustration and hesitation he had in making that decision. Funny how God works. I’m just seeing that now.

We’ll head to the beach in two weeks forsome much needed time with our feet in the sand.  We’ll come up for treatment, but focus on the girls and their sailing season and spending as many days in and on the water as possible. Dean’s favorite place, at the end of our jetty.  It’s a thin spot for us, something Michael Doyle uses to describe a place where you feel close to God. With all well wishes and prayers, he’ll be strong enough to paddle out and catch a few waves, hoot and holler with the guys and watch the girls do what they love as well. We’re a water family, and thats where we should be. He’s tired of cancer, and frankly so am I. It’ll be an important summer.

As if the last few weeks weren’t shitty enough, we lost a friend unexpectedly over Memorial Day, and suddenly, as bad as our week was looking, we realized it could be worse, that we were the lucky ones and that every single minute is so precious.  Our entire zip code is mourning the loss and sending prayers of strength and peace to Keith’s lovely wife and family. I seriously haven’t met a more upstanding guy ever. Its just tragic.

Dean’s grandmother also passed away last week, at the age of 99. Nanny Ursula was an amazing woman, who taught us all so much, for me in particular, the gift of summers at the beach, all piled in, and how it really can bring a family together, not to mention lots of late nights, laughter and good times. Also, how to serve tiny hot peppers with fancy little scissors, so you could cut them fresh for your pasta.

There have been lots of questions from the girls and discussion about family – and community and death and life. It’s been a pretty intense experience and we’re all a little more grateful for what we have, and certainly a little closer as a family.

In typical Cucinotta style, we have had some amazing fun amongst it all. The windows can be little, but certainly what carryus through the rocky terrain. There’s been lots of music, like clear the dining room of all furniture and have band practice with the boys music. Spontaneous, groovy and full of love. Dean and the In The Red guys have been together for 30+ years, certainly no lack of good stories and incredible memories, a true brotherhood – plus it’s my favorite thing to do, hang out at band practice. It’s magical and healing and fun and oh so good for the soul. if you drive by and hear them playing, stop in for sure.

Last week, our favorite New Orleans guys were in town for a blink – Dave, Andrew, Rob, George, Ed, Zach and Michael – together a powerhouse of energy and talent that make up The Revivalists. We’ve seen them countless times at this point, and become friends in the last little while. I remember when Dean first heard them – he smiled and said, “man – I gotta play with these guys!” and so it was…a little WHIPPIN’ POST – Revivalists style – horns and all – with smiles all around. We were all in awe watching.  Someone that night said, “the music will make it all better” and for that night, it sure did. What a blessing guys, thanks so much!Get out and see them this summer THEY ARE EVERYWHERE! Here’s a little snippet of the night. (click on the red words) Enjoy! When you watch it – you’ll want more, I know. We were all so busy taking it in, we really didn’t get much video – my sister has one as well, but it’s stuck on her phone 😦

Thank you to everyone taking care of us and making sure we’re fed, and watered – literally- we are so blessed to have friends and family surrounding us and loving us so BIG. xx

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!

Cheers to you Universe!

nikkicuc 2 Comments

Amazing how the universe works. Tremendous actually. Not 24 hours after arriving in California with the gang, a stop at the FireWire shop (thanks guys for your hospitality and efforts to ensure we have the perfect vehicle for the stay) a delicious home cooked meal with friends like family, some hot tub time and my favorite ice cream treats, I find myself standing toes in the sand shaking hands with Dean Randazzo. We’ve come out to Oceanside this morning to watch the boys slide around with Rob Machado and friends. (not so shabby) As we’re just about to head out- Dean Randazzo comes walking up the beach- board in hand, after a few fun waves at his close to home break. For those of you who don’t know DR’s story- he’s a cancer survivor, a surfer and an all around good guy form our very own Jersey Shore. He also has The Dean Randazzo Cancer Foundation. They lend a hand to surfers dealing with cancer. It’s a foundation we’ve always felt connected to – especially now, living in this window between treatments, resting up and building energy for our Dean’s next leg ahead. I guess it’s just God’s way of allowing is to say thanks to Dean in person – and his Foundation, for all they do. Your efforts and generosity are so greatly appreciated. We are blessed to know you and have you on our team. It was after receiving a gift from DRVF early this year (and some FF miles from Nonna!) we decided to pull the trigger on this trip. For more on The Dean Randazzo Cancer Foundation visit their website www.deanrandazzocancerfoundation.org
Cheers to you Universe- I’m still in awe of that one today. Woah.

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My Maserati Does One Eighty Five…

nikkicuc 6 Comments

mazerati

Even if you don’t have an end date – rest assured its not as much time as you want – so up the ante, and get moving on those dreams.  Our life is now accelerated whether we want it to be or not, personally, I would vote for a much slower relaxed pace, but apparently my vote doesn’t count. Life on life’s terms, it’s a real practice – equanimity.

Our life will always be affected by the treatment schedule. Sophia is right in saying, “if Dad didn’t have cancer we certainly would have more time.” but that’s not the case, so we go on and figure out how to fit it all in.  Our family’s pace may catch you by surprise, vacations and memories squeezed in to the increasingly shorter school breaks, out for music on a week night, yoga at 5:45am, work, play, band practice, chemo, coaching, games – somehow we fit it all in, seemingly creating more hours in the day. (We actually hope it becomes contagious!)

Remember, there’s no law against accelerating. Take the opportunity to use All 12 Cylinders of that Maserati to get yourself going 80. Push that excitement, the adrenaline – balance it with the speed limit, and right there alone, you create an experience. (hopefully not one of flashing lights or handcuffs) then, once you’ve reached your thrill, or run out of gas –  rest, rinse and repeat.

Top on our list is traveling around the world. As parents we put that out there – homeschool the kids, work around the world for a year, visit friends, make friends, go surfing, do yoga, write a book, experience life – what could be better? Not impossible!  Well  – then we have the speed limit. That turns out to be the unpredictable piece, you know – when the highway ends and you come to what seems like a screeching halt, from a nice 65 to 25 in a school zone?

I was hoping February 12th was going to put me on easy street for at least six months, maybe a whole year, but no. “Let’s tie you down and throw some protons you for seven weeks.”  (Maserati screeching to a stop – flashing lights, pulled over)  World tour on hold and we’re required to land in Haddonfield. Dad has treatment. Time to reset the schedule, add in seven weeks and carry on, continuing to dream, and plan, and figure how in the heck we can actually pull this off??!!  We’re confident, that if it’s meant to be, it’ll happen for sure. It’s a good start, California, and we’re counting the days. 18 days until sunshine, warm air, friends like family, kids in teepees, waves to ride, good laughs, bright smiles, and a much needed recharge, before those protons knock me down – before this flight is grounded, just a bit.

What’s on your list? What are your dreams? Where can you let go of things that are taking up time and create more room for living? We’d love to hear all about them! If there’s anything we’ve taken from this, its the lessons of risk taking, list making and creating time and space for what we love.  Now get out there and get going – before that clock ticks on any further.

xxN&D

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

nikkicuc 6 Comments

right left brain garden

Looks like I’m gonna’ work right up to another Gamma Knife procedure. Knife-less brain surgery. Friday. Here in Philly (thanks for the new machine!) I have a Neuro Surgeon, a Radiation Oncologist and a Physicist together in a room, and a four pinned head gear that is screwed to my head. They’ll put me in the machine, and stand on the other side of the glass. It can take a few hours. I have scars from the first procedure, the next two were not as damaging. W’ell wait and see what lucky 13 leaves, more battle wounds to wear.

The primary job – eliminate my latest brain tumor, number 13, by sending a very high dose of radiation to the tumor from several different directions…don’t move!  Yikes!  The machine is like all the others – loud, big and f#*$@% scary!  Its been a shift for me to be ok in these machines…I can do it, but there are scars…scars on my head, that will heal but each time, life is different.  Maybe I should get a tattoo on my head that says AIM HERE! or some sort of mark to indicate the point of impact. That would be good, a henna, so it’s there for a bit.  Just for fun – for a bit…why not?

Sophia asked me why there was paperwork from Cleveland Clinic on my desk.  The kids are sharp…we try and keep life as normal and this is what we do now (we also do tons of fun stuff) there’s work to do, treatments to go to appointments weekly. I try and present these events as a job and not get too emotional, however it can be difficult for me to handle.  It is brain surgery for God’s sake and yes I have had it three times already…but you never get used to this stuff. ever.

What was in those twelve portions of by brain did I not need?  They blast them with so much radiation that that part of my brain is gone! Was I using that for something? Is it something like my appendix? Something I can go without it?  I have a hard time remembering names, but I’m also just getting old.  12 pieces gone, one more on the way out…what did they do? I’m working full time-top of my game, playing music, paying bills, taking out the trash. Makes one wonder…

The side effects, yea them, go ahead and challenge my balance, take my surfing away, sailing, snowboarding, and skateboarding with my girls, yea – NO.

Challenging my balance is dropping in at Ulwatus in Indonesia on a friends Campbell Brother Bonzer (thanks Mitch) he said it knew that wave, and it did.  I’ll stick with that. Challenge my balance – Ha! I’ll beat you, you nasty little tumors. We’ve got Trestles to conquer again this Spring.

Nikki suggests I consider the almost thirteen sections of brain were not serving me. Maybe they held all of my bad memories, and fears, and doubts, and without them I can be free of their burden. Wouldn’t that be nice. Less burden. More room for fun. Yeah- I’ll go with that. More room for fun.

Birthday Fun!

nikkicuc 1 Comment

What do you like to do on your Birthday? Whatever it is make sure you fit in the fun! 47 years young and each minute a gift, of that I’m sure. Along with work, you need to fit in the fun! Today I woke to a fantastic video the girls put together . We typically make them a Birthday video and they decided to surprise me with one! What a great way to recap another awesome year of LIVING!

Then off to work, Our standard Wednesday meetings.

Quick detour for a meeting with my Neuro-Oncologist to talk about some potential brain surgery. It’s fun to call it that – brain surgery. Thank goodness for technology – it’s a knifeless brain surgery called Gamma Knife. In Philly.  Which I’m now told I hold the record on with three procedures done and looking at a fourth. I wonder if I get some sort of metal or a plaque for that? Anyway…stay tuned for that.

Finally back to the fun, dinner with my girls tonight and a little shoe shopping! (see earlier post) I can’t wait. Birthdays are so much more meaningful now, and my mom makes the BEST cake!