Dear Anonymous,
The girls an I are going to look really sharp thanks to the surprise that just arrived at my door!
Thank you.
More to follow
And yes I’m up now! Thanks for the boost.
Game on!
Uncategorized
The Fourth Nail…
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
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.
life’s better in miami
At Penn for the second day in a row for treatment. I’d so rather be back in Miami with my girl, some great friends and terrific music.
Thanksgiving Family ham – I mean Jam!
Thanksgiving Family Jam
This gig was born from a love of music. It came together as friends return home to spend time with family and be thankful for what they have. It’s not really a show but more a time to get together with some great friends and share some songs and maybe a story or two during this thankful time. We’ve been putting our music out there since 1981. It’s a common bond we all have and we love to share it.
Our band is even bigger than the four of us. The family that now surrounds us and the friends that support us provide so much. Like any art, our music is a translation of our heart, an expression of us. We all have a different musical tastes and have put that together creating a sound, a feel, a flavor all it’s own.
Having the opportunity to spend time in New Orleans has been a gift we are so grateful for. The music there has a soul you can feel. It’s a common bond many people have as either a musician or music lover. The people we’ve met there and the music we have experienced has filled me with so much love for the special art form that it is.
Born into music with both my uncles playing and recording, showed us something amazing. It’s a love for the art that I hope to pass on to my family and friends.
Live music has an energy and spontaneity that is unlike any other art form. Seeing two of our favorite performers The Revivalists and Trombone Shorty, in Nola last week at a benefit for Steve Gleason had an added twist – a local painter set up a canvas to capture the sound. He would paint as the musicians performed. What a great energy – to capture and record the event as it happened. To see the painting created as the music was performed added another facet to live music.
The painting was then auctioned off raising money for a great cause and introducing me to another inspirational man and his family and friends. I’ll share more about Steve Wednesday night-
I wanted to bring the band together along with our families and children – as we have now grown. I wanted to invite friends along to sit in on the experience. As I looked at the logistics we all could not fit in our house to play music, tell stories and share this way, yet I did not want to miss the opportunity to bring us all together. Fortunately we have an arts center down the street that will welcome our endeavor.
If your interested in joining the experience we’ll be at the Markeim Arts Center Wednesday night. Bring your favorite drink and an instrument if you like. Around 8pm, give everyone a chance to get in from out of town.
Meet my musical family and join our friends in songs and share the season. If you want you can make a small donation to the Markhiem Arts Center.
Cheers!
DNG&S
My Upside Down World
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”
Truckin’
I know it’s been too long since our last update. It was a challenging summer but we are so busy living when things were good, that we just couldn’t stop to write it all down! Our summer was filled with many great memories. The girls were all about sailing their boat Ventosa (in the water about 26 hours a week!) Gianna competed in away regattas as Sophia raced green fleet and completed the season by moving up a division for her last race in some very challenging conditions. Both girls enjoyed their summertime friends and packed in a lifetime of fun into eight weeks. Think: bay parties, surf camp, cousin sleep overs, sunset surfs, road trips, ice cream, Chappy, crab night, fairy Godmothers, salt air and cool summer breezes.
Along with summer, came a new protocol, one that is much more taxing on my system, but one Dr. Langer feels will best benefit me at this point. The fight is a little harder, more side effects, Dr Appointments, tests, lost time in CVS, phone calls, emails, managing my health. I keep track of my notes, manage the extra bills that come in and copy and send out CDs to other doctors for their perspective on my condition and possible courses of treatment. Add to this is the search for the best healthy food mixtures to combat the on slot of pain, fatigue, nausea and cracking headaches, throw in the balance of trying to keep a normal life for my family as this “new normal” can be overwhelming, and you have a FULL TIME job.
The balance is tough sometimes however, in this sea of madness it is important to celebrate. Especially this VICTORY as my scans have shown the largest reduction since the trial in NYC. My current protocol has yielded a 50 % reduction in tumors (22or so down to 11-ish) and if we were to calculate overall tumor mass the reduction would probably be near 80%. I think that counts as KICKING CANCERS ASS! The MRI of the brain also shows stable – still 2 left. And there is no new growth in any other organ. Phew!
Now – having the knowledge that this protocol, the most difficult so far, is working, I can have the peace of mind that the beating I am taking is all worth it as we are getting the need results to allow me more time! Who wouldn’t want more time? If I could invent time I would be rich beyond all comprehension, and in a way I am rich – and gracious for all that I have that makes this fight worth fighting!
With this news came the request to continue this protocol for two more months (into the beginning of December) We will re- evaluate with scans once again, and continue from there. Hoping and praying for continued improvement. Continued improvement = more time. more fun. more memories.
Wouldn’t that be a great Christmas gift? It’s on my list.
I know it’s early. but, make a list.
Start here: IF I WASN’T AFRAID I WOULD:
Yup- that list.
Then one by one start to create your future, day by day, just as I am creating mine. As we say here, “GAME ON!!”
Happy Fall! Get moving and grooving!
xx
DNG&S
Summer Lovin’
\Sorry its been a while- we’ve been really busy living it up the past few months and trying to squeeze every bit of loving fun in that we can! We’ve come to refer to it as living in the window. The stretch of life between Dean’s scans. The small break in reality that we give ourselves to counter the stress of dealing with this crazy disease. The most recent window has been filled with soccer games and sailboats, band practice and birthdays, living in the moment and loving even bigger. We’ve been so blessed with opportunities to do and see and to share the world with our girls.The transition form New York back to Philly for treatment was bittersweet, although much less taxing on the family, its never good when the medicine stops working. It typically means a few weeks of scrambling to find a new plan, lots of collaboration of the nurses and docs and inevitably a new schedule to get used to.
Which brings us to the latest update-
We counted tumors this week- 22 in all. Sounds like a lot for sure. Even still, this comes as good news. All 22 pesky tumors are contained to Deans lungs and haven’t moved anywhere else. If you saw him sing a few weeks ago- you’d never believe it. He is starting to feel a bit fatigued at times, and squeezing in the fun takes a bit more effort, but he’s still quick to paddle out in the ocean, launch the boat w the girls, and dream up the next big adventure. Work has been going fairly well, and his team at Boeing is so tremendously supportive, but with the latest developments and the transition to a new protocol, it looks like some time off is in the cards.
Well take the next few weeks to get set on a new trial, possibly taking is back to Sloane or Duke, refill our tanks for this next round of treatments and conquer the lists of things we want to do this summer. Something we suggest everyone do- making the list, not quite as far reaching as a bucket list, more like things you want to do but don’t make the time. Dean’s has sailing the sunfish in a race, Sophia will be working on getting barreled (if the summer flats don’t hit too soon!) Gianna wants to have a friend stay with us at the beach for two nights, and I’ll be making blueberry jam. The lists go on, insuring that we make the most out of our time this summer, and that everyone gets to share in the fun!
Well be spending our time in Ocean City, and taking a few road trips up the coast visiting with friends, and seeing the sights.
Please continue to pray for Dean and add to list his mother, Angela Hawes. She is currently in the ICU at Our Lady of Lourdes after complications from her recent knee replacement. While she is in stable condition, she has a long road ahead. Thanks for all your good thoughts and kind words! They mean the world! Hope you have a safe and Happy 4th- make sure to catch some fireworks- they always make us smile 🙂
xxo NDG&S
Count Your Blessings
We’ve been listening to a TON of great music lately, but the one songs that I have been playing over and over in particular is called Blessed by Jill Scott.
It is a wonderful reminder of what is right and good and that we should all take some time out to count our blessings and maybe even put them in to words. I always say gratitude unspoken is wasted.
While Deans latests scans, show, once again, an increase in tumor growth in some areas, we are looking at the news as a blessing. Things could be worse, he could have debilitating symptoms of his cancer, his treatment could have tremendous side affect, and so the mind goes on….
His current course of treatment, still in Philly, will most likely include some targeted radiation to his lung tumors, a slight change in the dosing of his chemo and unfortunately, hernia surgery. Hoping to get it all in before the summer sun is upon us. Have to keep him in the water, or his gills will dry up.
Dean is feeling pretty good generally. Still running, biking and practicing yoga, all to keep conditioned for his passion, sliding around on those waves.
We had a great family vacation to California (thank goodness for airline and credit card miles, and friends with spare room!) where we conquered big dreams and big waves, spent time with family and dear friends-new and old – loving bigger and laughing even more. Seriously, we all giggled every day, it was AWESOME! Just goes to show you that sun, surf and love are three VERY important ingredients to our best life. THANK YOU Santa Monica, LA, Laguna, and Encinitas CA family, God willing, WE’LL BE BACK NEXT EASTER!
Shortly after returning home, Dean and I headed to New Orleans where again, we were surrounded by more wonderful, loving, true blue friends who have taken on the task of making sure the music never stops- well maybe for a few hours, but I swear we were singing in our sleep! WE ARE SO VERY BLESSED and just LOVE to be with you, even if for “just some dinner and a show.”
Back at home, our Haddonfield crew conquered The Broad Street Run.
10 miles of inspiration, with our best guy Deano, running right along with us. If that doesn’t inspire you – the guy with 4 active lung tumors making his way through the City of Brotherly Love, then, well, I don’t know what. WE LOVE YOU and could never navigate through all this without your support, concern, PRAYERS and super powers to get us out and going. You lift us each and every day. WE ARE SO BLESSED.
Now that the days are longer, we are really enjoying our front porch, and just hanging at home. Riding bikes, catching up on projects, playing music in the living room, scoring goals, having round table dinners with our best crew, spending time with family and slowing down a bit.
We took early spring to recharge and LIVE IN JOY, now it’s time to deal with the treatments at hand, and recover for a summer full of fun and love.
We hope you are all well, and that you continue to be inspired to follow your dreams, kiss your kids and love one another. We never know what turns life will take. Laugh often, love more, live out LOUD!
All our Blessings to you and yours,
xx
N
Filling My Cup
Two years ago today my world turned upside down. God believed that I could do more – I’ m not so sure…but who I am I to ask why? No real answer there- just that he thinks I can so – GAME ON!
It’s been a long two years, and the best respite other than laughs and good times with family and friends is travel. And so, we travel.
Nikki just back from Key West with the girls, Me to PR with my brother, and the whole family to California in April. There is so much to see and experience. I see each day is a gift – and well, then they should all be Saturdays! The best they can ever be. With that I will say…please, from me to you- GO DO!
Let this be the best year ever!
I hope to create so many great memories that my mind is filled with happiness. Because really, there is plenty to worry about. Why not fill your life with all your favorite things? (and oh yea keep doing them) It’s like the sun chasing away the rain.
Always keep trying and never give up!
Again, it’s time to fight for what I want –to be around my family and friends and have great times and make memories that will last forever – God willing.
2 years is a good milestone. Like on a PowerPoint chart with a schedule of events.
Currently I’m on a clinical trial protocol, taking us to NYC on average of once a week for appointments and infusion (we have some great lunch places) in addition to a daily oral chemo drug. Initially there was a good response, with fairly manageable side affects. The most recent scan however, shows that the cancer found its way around the drug. And here we are in February, and – well a not so good scan result, that pretty much disqualifies me for the trial. SO, back to the drawing board.
Dr Langer, Vicki and Suzie are fantastic – they take such good care of me. And with that I am so humbled and appreciative of all the health care folks – docs and everyone at Penn, Sloan Kettering, Cleveland Clinic, Copper and Temple Lung not to mention countless other doctor friends on my team! When I send out my emails to all these top docs and ask the inevitable question – what’s next? I just kind of pause as you believe they have the solution, the path to the cure, or in my case the best life possible! So damn-it, lets have it – the best life possible.
With all this, I have re-opened MSI studios (Mod Sounds Incorporated) This is the original Camden/Pennsauken studio that my uncles had going back in the 60 and 70’s- what an influence that was on my brother and I. It’s so cool to have a recording studio in the family. After my uncle Geeter died this past year, I went to his house and found some microphones, cleaned them up, and just this morning Sophia and I were recording Three Little Birds. So as Bebe and I sang this morning – “Don’t worry about a thing, because every little thing is gonna’ be all right!” the first official track went down. There will be many more to follow.
The other issue at hand is that there’s a brain tumor is in a place that is challenging my balance. So what do I do here? Up the gain and PRACTICE MORE YOGA. There is no way this disease is going to take my balance away from me. I have concentrated so hard on my favorite thing of all – surfing. So many ways to enjoy it from mellow long OC lines with my brother, GB, Scottie and Critter to some of Indonesia’s finest with my Australian family and friends. My time in the water sustains me, the jetty at my home break – my “thin spot”.
Along with this latest news has come another crazy idea – to run Broad Street again, all 10 miles. It was 2008 Broad Street when I first I set out to run forest run. This set into motion Philly Distance (1/2 marathon) and eventually Philly Marathon in 08. I later found out that my running was training me for the fight of my life. I hope to run that race, finish at a decent pace and have accomplished it – to ‘have run’ while being treated for cancer and fighting for my future.
As for family – this is the new normal. We all have our way thru this madness – which takes me ONE STEP BEYOND! (Our high school graduation song). We have a California family trip planned with more sun, surf and love. From C&C in LA to yoga surf friends in Encinitas we will drive the Pacific Coast and explore, see some old friends, and some new friends, and LIGHT UP THE SKY! –Literally jam the hard drive full with fun stuff and great memories.
So with all that said, I hope you feel up to date and inspired! I have my sources of inspiration as I often talk about them, and I hope you do to. It does take a village, a tribe – all disciplines, a balance of music, art, surfing, family and friends – all the good stuff, to complete our lives. I am focused on positive visualization. I can see the cancer shrinking. I can see that – it may not be possible for my type of cancer right now but I will not lose faith in my vision and the belief that my life on earth is not limited by my cancer but is enriched by it.
Namaste, Dean, N, G & S
LIVING IN THE WINDOW 