cancer

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.

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.

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

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!

Look sharp while your in the machine

nikkicuc 3 Comments

Time for scans. Time to get dressed.

My shoes. I like to wear my sharpest looking shoes. Here’s why:

I wear my sharpest shoes to remind me I’m not as sick as these clothes make me look. It helps me to try and dress well. It makes me feel better, better about myself, better about what I can do, what I can accomplish.

Penn is a great hospital, however it’s a city hospital. Therefore the gowns you wear for the tests are “city”  – too big and don’t fit, probably 100 years old, open in the back so you ass could hang out – a great feature. They have you wear two gowns, one in the front and one in the back, so you ass does not hang out, wow that’s thoughtful. Rather than get new gowns or a robe style like at Sloane Kettering (they have a ok solution, fancier for sure, that works better)  just throw two at it, fuck it, we’ve got billions of them. I can hear that discussion/presentation in the meeting, showing the metric, explaining the cost benefit to the solution, totally disregarding the patient. That’s not important to them, mainly because there not in here week after week, having to put these two gowns on and look sick.  Seriously, if your were not sick before the gown – put one on.  You’ll feel like a sick person.

Waiting Room. Shit. I never talk in the waiting room. And here is why:

Talk about ports with the guy next to me? Here’s how that conversation goes:

“What is a port?”

“Its an implant in your chest the connects to your carotid artery.” – nice.

He’s older but cuts logs and active. He doesn’t like it. Then the guy across joins the conversation. Another guy is asking why he needs to have a line in today, he is giving blood tomorrow, he’s confused.

They’re not extracting from that line they’re pumping shit in. And oh yea – the guy with the port has a line in his arm because he’s having a pet scan. So I guess the nuclear shit can not go thru a port. Less of a reason to get one.

Back to the guy across. He proceed to tell us how he will check out. He says not like his dad did – alive too long it sounds. He explains he will go off the chemotherapy, pump up the morphine and end it himself. He’ll make sure there is no mess too. That’s thoughtful. Fuck!

Yeah- never talk to the people in the waiting room.

Back to my shoes –  of which I’m not wearing.

There is a new protocol to follow for scans. They give you these socks. No fancy shoes. Low budget airplane socks. Sick looking socks. With grip on them so you don’t slip. Functional in that respect but sick looking no the less. Ugh. I could have shoes on and probably should. However today I followed all the rules and have the socks on. Trying to maybe make it feel like the beach. Toes in the sand. Barefoot waking. Ha. Well with the neuropathy effecting my feet and hands, numbness and cramping, limiting my use of my hands and feet and making my feet feel like blocks of ice these socks kind of help. That’s great. Frozen feet. Like your walking in the snow with no shoes on. Not at all the beach. My hands -challenged even more to make them work properly. Ugh

I compare san days to flying, except you’re not going anywhere good. No sunny warm beach, or cresting waves, no european coffee, or family getaway. Just you, in your head, wondering how this is all going to turn out, sharing the same space as complete strangers but even worse because they are fucking sick and some really look it. I try very hard not to look or act sick. If you look good, you feel good, and if you smile and are nice, and your bag fits nicely under your seat, maybe the flight attendant will bring you an extra drink.