Close your eyes, and just listen.
Put all your attention on the sounds around you, and let your mind calm.
–a mindfulness reminder from chill-app.com
Privacy Interrupted. Expecting Miracles.
My husband, Mark was a private man. Mark never sought the spotlight.
As a NYC public schools principal and educator for 33 years in Ocean Hill –Brownsville, East New York and the South Bronx, Mark preferred to give credit for his schools’ success to his teachers, staff and students. As a Central Park and Roxy dance skater Mark’s friends were many though just a very few knew his “story.” But he knew theirs.
He was the kind of curious guy who when you were done talking you knew very little about him, yet he knew many things about you. He would ask “What high school did you go to? What did your parents do? What’s a good restaurant in that neighborhood?” You would walk away thinking, “Hmmm. What a great conversation we had. “ Of course it was because you got the chance to talk all about yourself to someone who was interested in the answers.
In March of 2008, Mark thought he had a skating-related pull in his side. He was sent by our family physician for a scan that revealed some kind of mass and was immediately directed to our local hospital for testing. After a week of tests he was diagnosed with sarcoma and we were sent to Memorial Sloan-Kettering Cancer Center in New York City.
When we met with his oncologist, Mark was told the only proven and effective treatment for his kind of cancer is to remove it surgically and that it would return. As it happens there are the slow moving versions of sarcoma and the aggressive fast-moving types. We were praying for the former.
When the results came back after surgery it was revealed to us that Mark’s cancer was “de-differentiated retroperitonael liposarcoma”. Rare. Aggressive. Shitty. Bad luck.
Mark was told that there were a few clinical trials just starting and that by the time he needs it there may be a drug that might slow down the progress of his particular cancer. The odds were against us though.
After his first surgery Mark enjoyed one year of being cancer-free. When a scan came back in the spring of 2009 showing the return of his tumors he underwent a second surgery. Unfortunately the growth rate of the tumors had begun to pick up speed and were back within 9 months, too soon for another surgery.
In the spring of 2010 Mark began a two-year course of chemotherapy that by some miracle kept him stable for an unheard of 24 months, yet often he was quite exhausted.
Still we continued skating in Central Park and along the pathways of Hudson River Park. We resolved to enjoy life no matter what was going on. Marks’ monthly scans held us in suspense. For a brief while he is told that the tumors are stable and we breathe a sign of relief but we knew eventually the news will not be good.
In December of 2010 we were home listening to jazz on WBGO radio and just enjoying being together, when I turned to him and said this, “ Mark, I read about this new fundraising event called Cycle for Survival and I started a team that you and I are going to lead to raise money for rare cancer research at MSKCC. “
That shook Mark to the core. He flew off the couch and said in a very loud voice, “No, no, no everyone will know now that I have cancer.” He railed at me.
“Honey… Mark”, I said with tears welling up, “ What if maybe people already know? Maybe they noticed that you went from having a full head of hair like Richard Gere to complete baldness like Bryan Cranston in Breaking Bad. Maybe they know something is up.”
“Not funny, “ he said to me. I am not doing this.” He wasn’t buying it right then. I was shaking with upset but was not deterred. I knew he would come around and be okay with what I was up to for both of us. I had to do something.
Up until reading Jennifer Goodman Linn’s story in a magazine about being fearless and the genesis of Cycle for Survival, I felt powerless that there was nothing I could do to help. The outcome was a foregone conclusion, but being a part of Cycle for Survival gave me a purpose to fight like hell. I felt that I was part of something larger than our situation.
So for those closest to Mark it was a bit of a surprise when, in one week in February of 2012 he agreed to be on Eyewitness News and then Fox and Friends to be interviewed about his rare-near-impossible to treat cancer and Cycle for Survival, a national indoor spin event to raise awareness and money for rare cancer research at Memorial Sloan-Kettering Cancer Center in New York.
Mark had been asked to do some TV spots by the CFS PR team and he said “yes” and was then photographed, interviewed and rode a cycle on national television to publicize the cause.
You might say that our leading two teams in NY and Long Island, comprised of family and friends was transformative for both of us.
“I was not all that thrilled with the idea of sharing my story and going public with what was going on in my life. I have always kept a low profile. It was my wife Nancy who started our indoor cycling team. I am glad that she did it. “ Mark said in one of his interviews. Over the past four years our team originally named Expect Miracles for Mark has raised over $70,000 for rare cancer research.
Mark once said this, “ Being part of something bigger than myself, helping to raise millions and cycling alongside, nurses, doctors, patients helps me as well.” Mark proudly wore his Cycle for Survival hooded sweatshirt to spread the word and as a reminder of the “love, tears and smiles of that inspiring afternoon.”
“No one wants to be in the cancer club, but when your moment comes you have to step up to the plate and keep swinging. When you have a rare cancer with little or no treatments available, you hope, you pray something, anything to give you just a little more time. You just want to hang in there long enough for the miracle,” said Mark.
On September 18, 2012 my brave husband Mark, lost his battle with cancer. A few days before he passed away he reminded me to continue with Cycle for Survival so that no one has to suffer like he did. He was wearing his special Cycle for Survival team hooded sweatshirt when he died at home surrounded by loving family and dear friends.
His wish: that a child with leukemia, a sister with a brain tumor or a mother with pancreatic cancer or a person with any cancer can be told, “We got this. We have a cure and we know that it will work.”
Now that would be a miracle for sure.
And so we continue to be a part of Cycle for Survival with our team renamed Mark’s Magicians and we are always looking for people to help us win this battle. Come and join us.
The clock is ticking.
The Clock is ticking.
MARK AND I USED TO SAY IT ALL THE TIME.
AND RIGHT NOW 200% OF EVERY DOLLAR DONATED GOES TO RARE CANCER RESEARCH led by Memorial Sloan-Kettering Cancer Center
WHY? FOR EVERY DOLLAR DONATED EVERY DOLLAR WILL BE MATCHED.
100% 5.00 becomes 10.00, 50.00 > to 100.00.
BUT ONLY UNTIL DEC 31ST.
PLEASE BE AS GENEROUS AS YOU CAN AND MAKE YOUR 100% TAX DEDUCTIBLE DONATION TODAY
TO CYCLE FOR SURVIVAL IN LOVING MEMORY of OR IN SUPPORT OF SOMEONE YOU LOVE AND FOR FUTURE GENERATIONS.
I ride to honor and remember Mark.
I ask FOR DONATIONS (and I promise you no one likes to have to ask for them and I include myself there)
–however each Cycle for Survival season I ask again so that the money can be put to research to find treatments so that one day every person can be told,
“We have a treatment for you and it works.” And then I would not have to ask you anymore. that would be pretty cool.
http://mskcc.convio.net/goto/teammark <go here to donate
LET’S CONQUeR ALL RARE CANCERS. Every dollar matters. Thank you for your generosity.
http://mskcc.convio.net/goto/teammark <go here to donate
May your new year be happy, healthy and full of love.
PS peek around the website and see how the money is being used and the treatments and trials in progress. Join the Battle. xoxo
donate here. xo
The music in your heart is always in tune
My hubby Mark ( the one in the Blue Shirt with the really nice legs) always gives me great cards.
I have treasured this one from the day he gave it to me. Inspiring. And so true. One of the boxes on the card says, “Keep dancing.” One of my favorite things to do. Dance. Especially with him.
Keep dancing, yes indeed.
Dance with life.
Even when it clearly sucks. Right now there are indeed some s*cky aspects. Mark’s cancer started to take off because he was not able to be treated. Eeek.
So it’s a battle and I am looking to make a miracle. I live in that possibility of magic and miracles. I wear a bracelet from my friend Payson Cooper that says Expect Miracles. I pray for one daily and could use some help here. If you pray, please put Mark in there somewhere. I do not care what your faith is just please have some for him. Whatever it is for you. And thank you for that.
When I look at this photo of us taken in Cancun in 1991, I am grateful we got to take this silly shot in Cancun.
Don’t we look chic in our snorkling gear?
Mark is wearing an Aruba shirt and I am wearing one that I found blowing on the beach that says Can-cun just like Coca-Cola. We are about to go snorkling in a man-made place I remember it was a bit strange the water murky and a little too warm and the fish looked like they were tired of all the tourists.
No matter. The drive over there from our little eco-resort in our tan Volkswagon beetle was priceless.
(Like the Mastercard commercial.)
When I think about that trip and some of the other adventures we have taken together both away and right here in NY, I long for a few more of those days again.
As grateful as I think I am I get to see that sometimes I can be a wretch of silent complaining of how bad things are right now and then “poof” in a instant I snap out of it and give it up so I can ask for what I want instead..so.here is it.
What I want for my sweet handsome hubby Mark is to make a miracle for him please one more time and bring him to wellness and more good hours than suck-y hours. He may have been dealt a very unlucky cancer card, but I am praying for good fortune to smile on Mark.
Message to the big guy>>>May the meds work.
Mark is someone who changed the lives of children in some of the most under-served communities in NYC.
An educator with a caring heart and a flair for creativity and bringing math to life.
Please give Mark stability and wellness and a date to skate in Central Park again.
I know you got it in you.
“You must pray that the way be long, full of adventures and experiences.” -Constantine Peter Cavafy, Greek Poet
Hot town summer
Is this a poem?
So far from what I can tell.
This is the sizzling
summer of the hot and the buggy.
(Who you calling buggy?)
I mean yucky.
Let it go.
Live in possibility.
I am the possibility of Jo’ie de Vivre
(Francaise for joy in life thanks France for that)
July 14, 2012
Nancy in New York
Today Mark and I went to Memorial Sloan- Kettering Cancer Center. It’s his follow-up after an 8 week state of siege over his kidney function. He was in renal failure and needed an emergency procedure over the Passover-Easter holidays. Amazingly his cancer is holding steady. Which is a relief. I am grateful to Dr. Schwartz for whatever he does on Mark’s behalf. Liposarcoma is a scary card to have drawn.
I overheard one woman in the waiting area say two things one was,” hey I can still get up and walk and look at the sky, so that is something to be joyful about.”
The other was a quote from Woody Allen, ” We are all going to die, it’s just that I prefer not to be there when it happens.”
I interviewed Mark the other day in Long Beach about summer coming.
For you. Miracle Makers. Happy New Year 2012
Counted Blessings:Peppermint Flat Holiday Photo Cards
Check out our collection of Christmas cards and holiday cards.
http://ow.ly/7GbTJ Please Donate to Cycle for Survival NOW. 100% of your dollars go to rare cancer research at Memorial Sloan-Kettering Cancer Center. Fund clinical trials for: Pediatric, Pancreatic, Ovarian, Kidney, Leukemia, Lymphoma, Sarcoma, Melanoma, Brain and too many to list here. Go to website and dedicate your donation to someone you love today. Over 50% of cancer diagnoses fall into “rare” and “Hard to treat” category.
Remember, Nobody beats cancer until we all beat cancer.
http://ow.ly/7GbTJ Thank you from the bottom of my heart. Hugs and kisses for health and Happiness.
Holy Shift! Kundalini to the rescue
Shift Happens!Sometimes in big piles.
John Lennon once said, “Life is what happens when you are busy making other plans.” (As it happens he is not the first but probably the most famous to say that and boy is it true)
About two years ago shifts happened all over my life. On the very same day (March 12, 2008) my handsome vibrant husband Mark was diagnosed with a rare very- difficult- to -treat cancer and my mother died.
No joke all on the same day.
And then about a month later, my beautiful german shepherd Lucy was diagnosed with a rare untreatable cancer and we had to put her down or she would just bleed to death.
It was like an earthquake in my life without all the destruction and debris, except for one thing, I practice Kundalini Yoga as taught by Yogi Bhajan at Divine Yoga in Rockville Centre, NY. My teacher, Arlene Lucas brought me through this so that I could be in a place of grace and calm rather than upset, fear and worry.
Really what is the point? Who is it for? The person in distress does not need my upset do they?
What Kundalini yoga gives me is a technology to clear out fear, anger pain, blame and upset. It helps me to be a wizard and warrior in my life no matter what is happening.
Forget positive thinking this yoga works on the a cellular level that actually has helped me to stay sane, stay loving, compassionate and peaceful without even trying. Sometimes I blow it but mostly I am free from the madness that this storm that came swirling into my life could possibly cause. And believe you me a friend or two thought I was a cold, unfeeling bitch ( a few still do) because I am not running around wringing my hands.
Who exactly does that help? If I want to be there for my husband it’s up to me to hold the space of loving kindness for him. Coming from a place of “I am so worried” makes it all about me, no?
And by the way I do cry. After my yoga class I get into my car and sit there for a few minutes and cry just like Holly Hunter in Broadcast News. And then, poof, like magic I am free to be the best me I can be for my handsome generous husband who has always been there for me.
Shift does indeed happen. Just glad it’s not really an earthquake.
So how do you get some of that energy?
If you are in NY or coming for a visit come to Divine Yoga in Rockville Centre. We have had visitors from near and far including Seattle, Portland and Los Angeles.
And special note: there is a Wednesday class called “Living with Cancer” with all proceeds going to the American Cancer Society. If you live on Long Island or know someone there who is fighting cancer or you are a caregiver who needs some TLC, go to this class. It is an hour of restoration and healing and yogi tea.