Cycle for Survival. Game on in 2022
Every donation counts.
May 14, 2022 we cycle outdoors at Hudson Yards in NYC
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.
(Clinton loved Mark)
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.
Donate here please it’s matched
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 once again in NYC with our team renamed Mark’s Magicians and we are always looking for people to help us win this battle. Come and join us on what would have been Mark’s 75th Birthday. Every dollar is being matched and 100% goes to research at Memorial Sloan Kettering Cancer Center.
And if you’re in NYC on 5/14 come down to Hudson Yards to cheer us on.
From Cycle for Survival website
About 50% of people with cancer have a rare cancer, but research is drastically underfunded. Help me raise money for rare cancer research to bring new and better treatment options to people around the world. 100% of every dollar funds pioneering research and lifesaving clinical trials led by Memorial Sloan Kettering Cancer Center.
Your support builds a better future for every person facing cancer.
Every donation counts! Please consider making a tax-deductible online donation today.
Clearing out, making space for new things simplifying, reorganizing. An old “friend” appeared in the back of a cabinet.. the 8 Cassette Tape series (you read that right) of the 7 Habits of Highly Effective People a workshop series with Stephen Covey teaching live. It was quite a gift to have that available, a daily lesson with Stephen Covey.
I listened everyday for a year on my Sony Walkman with am/fm radio and cassette player on the way to the city- in and out on the Long Island Rail Road 38 mins each way. So valuable. The Sony Walkman was a gift from Mark. It was a Sports Walkman, yellow and nearly indestructible which was needed for a commute to work up and down the stairs and all. The program was a life-changing experience and I got a “life mission” by listening to Dr. Covey. I wanted “The ability to subordinate an impulse to a higher value.”
Each habit is so simple yet not always easy and quite profound. If you have never listened to Dr. Covey deliver the 7 Habits then you are in for a treat. Try this one at home.
Habit 5 – Seek First to Understand, Then to be Understood
Use empathic listening to be genuinely influenced by a person, which compels them to reciprocate the listening and take an open mind to being influenced by you. This creates an atmosphere of caring, and positive problem solving.
Enjoy your weekend.
In the fall of 1962 my mother, Betty, took a teaching position at Division Avenue High School in Levittown, NY. My parents had just divorced mom went back to work, not taking any alimony just to get out of the marriage. She probably never would have seen any of it any way.
As I remember it my mother and father spent an awful lot of time being nasty to each other.
She sniped; he would goad her and be very nasty. My father somehow managed not to pay child support and, based on the speed with which he had a place to live with a woman he soon married, that he was probably not faithful to my mother and she knew it.
It was better when they split up.
We did have less money without my father. On the other hand he was kind of tight-fisted with the cash and blew a gasket when he discovered the hidden vacuum cleaner in my closet when he was trying to fix the door that had come off the track.
My mother was a class of 1938 NYU school of commerce college graduate. It was 1962, her options were far fewer than women have in 2015 and salaries were minuscule.
She became a teacher of business subjects that year teaching Regents typing and Gregg Shorthand and transcription. At Division Avenue she met some new friends among them: John Burch our boarder, Tim a tall angular man who taught biology, Dan strong slight build tall and blonde, Dan taught History. And then there was Julio.
Before there was AirBNB, there was the teacher bulletin board-my mother rented out a tiny bedroom for a tiny income to a fellow teacher by the name of John Burch who looked a lot like Paul Giamatti in the film Sideways. Mr.Burch was an English teacher and he stayed with us in our Levitt house, while he waited for his family to move into their new home in the area. He was a gentle being. Probably too soft for some of the “hoods” he faced at Division Avenue in 1962.
John Burch drove with my mother to Division Avenue High School each morning. Mom drove a 1956 Turquoise and white two-tone Ford Victoria with chrome trim in which the passenger-seat only reclined. My mother would take off down Trapper Lane and all you could see was Mr. Burch’s nose and a wisp of his already thinned out hair flying in the breeze from the open window. I remember laughing so hard and not being able to stop, tears streaming down my face watching John Burch’s nose fade off as she turned the corner.
One day Mr. Burch left us. We said our good byes and within a day or two a Mr. Julius Nicholai Schmidt came to stay. Mr. Schmidt a diminutive man with long black eyelashes that framed his dark brown O’s of his eyes. He was a Spanish teacher whose family had run from Castro’s Cuba. Mr. Schmidt (or Julio as I used to call him) had one leg shorter than the other with a special built up shoe to accommodate the difference. Julio was a bit of a snazzy dresser always in a jacket and tie (no one wore sweatpants or elastic waist jeans in 1962) and though bald, wore a black toupee that suited his style just fine. Having Julio with us was like having a party every night. Julio and my mother would make paella and bean dishes, drink scotch and sometimes, even dance to Latin jazz. He was a good buffer for me; my mother was less unpredictable with him around.
Once, after Julio moved into the brand new Mitchel Lama apartments on the upper west side mom took me to a New Year’s party to welcome in 1963. I was 11 years old, tall for my age and wore my special “grown-up” red – pencil-skirted dress.
When we got to Julio’s place and the door opened there were some of the most beautiful costumed women I had ever seen. Dazzling in sequins, feather boas and sparkles, high hair and fabulous makeup.
I remember at first feeling out of place not dressed right (a story that has continued my whole life) and stayed out on the terrace. One of the sparkling ladies said “Come dance with us sweetheart don’t stand out here on your own, “ and then in a moment there I was dancing to some of the best dance music I had heard in my young life, men and women, women and men all mushed together shimmying and shaking, feathers flying.
As I remember it was a wonderful night. My mother was busy being a queen bee and I was mostly left to my own devices in this crowd of costumes and celebration, that meant that for that night she was not embarrassing me or picking on me in some way. I could just be.
And then there was Tim and Dan. They both taught at Division Avenue High School they lived on the upper west side. Tim was a biology teacher who drove with Dan in a 1962 Ford Falcon to Levittown from West End Avenue each school day, Dan taught history and then became a librarian. My mother, Tim and Dan became fast friends. They had many interests in common, good music and theater chief among them, good parties, good booze along with a curiosity for ideas old and new. Both Tim and Dan were tall men from Arkansas who had come to New York as many do to find their lives.
We did so many things together with Tim and Dan and Sam and Al and a famous illustrator named Joshua. Once we went to the City Center on 56th Street to see Carl Orff’s Carmina Burana. The opening piece of music was Stravinsky’s Oedipus Rex complete with eye-gouging. For some reason we got the giggles at that part. What was so funny about gouging out eyes will still be a mystery to me, but we got the kind of giggles that are infectious hard to contain and one by one our entire row started to laugh. It was then that the usher came by and tossed us out into the street until we could compose ourselves. She muttered something about “setting a bad example for the child.”
We returned after intermission and were better behaved.
In autumn Tim and Dan bought a cabin in the woods of Massachusetts near the towns of Heath and Dell. My mom and I drove up with them to spend the weekend, in her now newish car: a 1961 butter yellow Mercury convertible. In the chilled autumn air we drove with the top down, me in the back with Dan, the heater running up front as we sang made up “Gregorian style” chants, switching to jazzy made up “skats” and then sliding into an actual genuine song that we sang in some kind of strange multi-part harmony. At some point we just were quiet and looked at the scenery and breathed the night air as we climbed higher into the Berkshires.
That weekend I helped Dan at the edge of the property do some pruning to cut down overgrown brush and weedy trees. It was the first time I had ever seen a pair of “loppers” and thought, “how great to have a man around who knew how to do this.” Dan took off his shirt in the warm afternoon sun and I saw his tanned muscular body rippling as he worked. I was a little kid but by this time I had a bit of a pre-teen crush on him and seeing him like that just fueled the flames of being “in-like”.
That night we took flashlights and walked along the road following the stone minute-man fence lines to Joshua the illustrator’s house. The house was built in the 1700’s and sported low ceilings, a wood-burning stove. George Washington could have slept there.
Although the house has been electrified Joshua designed it to keep its revolutionary war period feeling. Our faces were illuminated more by the light of the fire and the candles that were scattered around than from the light fixtures. It was said in the most hushed of tones, “That the house had ghosts.”
There were others who joined us that night, friends of our friends who had gathered for their weekend in the country. They lived in little towns nearby. We played games like charades, the adults drank scotch, bourbon and wine and then we gathered by the fireplace, toasted marshmallows and Joshua shared ghost stories.
On the walk back to Tim and Dan’s house we heard a crunching sound like footsteps coming from an open field. Then we heard it again. Was it a ghost like Joshua talked about? Was there someone there? I was really scared, but I didn’t want to show it in front of Dan, though he did take my hand like a dad or an uncle would to reassure me.
We drew closer to the sound. It happened again, there a footstep a crunch of the leaves. “Who is there?” Tim and Dan say aloud. “Who is there!?,” they say again. My mother and me, two scaredy-cats creeping toward the sound hiding behind the two tall men. We get as close as we dare as Tim and Dan shine a flashlight into the darkness.
Six sets of big brown eyes stare back at us. “Cows! Cows!” Tim and Dan say aloud and we each break out into peals of laughter. We laughed the whole rest of the weekend just by saying, “Cows! Cows!”
Years later, after I graduate from high school my mother tells me a “secret” about her friends Tim, Dan, Julio, Joshua, Al, Ken and Sam. A best-selling children’s book author of 50 titles, a famous illustrator and artist, a well -known film-maker, a biologist and several educators amongst them.
They were gay. Homosexual. Not into women. Julio’s New Year’s party in 1963 had more men guests than women, though I did not realize it at the time. Julio was a cross-dresser as were many of his friends. He was also gay.
And then there was the biggest heartbreak: Dan would never have asked me out. I still thought one day I would be old enough that our age difference would not matter. I was crushed.
“Nancy we have to keep it a deep dark secret or they would lose their jobs, their homes, their livelihoods, it is illegal to be gay.”
So I thought, that makes you a “fag hag” a not very flattering term I had recently heard used about divorced women who hung out with gay men. Mom was not gay she just loved the company of her friends who happened to be male homosexuals, simple as that. (And I am guessing was more enjoyable than the dating scene.)
The following summer my mother marched in the Gay Pride parade in Provincetown in solidarity with her friends. In time they drifted away, Tim bought a beach house and got married to a famous woman photographer and then they were all gone from our lives. Mom moved on to other friends, other schools and even a few boyfriends. She tended to dump the good ones whom she could marry and have a good life with, that tended to infuriate me.
The events of the past few days made me think of those days and I hope that at least one of those smart, fun and interesting gentlemen is still alive to witness the gay marriage decision last week handed down by the Supreme Court. And I know that even with that it’s time to get ready for the backlash, battle lines are being drawn and next year is 2016.
May a rainbow come to you after the rain and your heart be your guide.
Call your friends. Call your family. Call your mom. Call your cousins. Call the people you love.
You read that right.
Call your friends.
I am working on a new idea.That thing in your hand that you are always looking at, (I hope not while you are making love though puleez!)
That is a PHONE as in iPhone. So why not use it?
I know totally radical. But I am going for radical and nothing less.
Am starting a “Call -your-friends-and-family movement”.
Use your phone as a telephone. Yes I know I am so weird, so last century.
Call me crazy.
Call me old fashioned but I am up to bringing back talking on phones to each other using our ears, hearts and voices. Just not so loudly in an elevator that I know all the details of your root canal and please keep your voice down on a train or in a restaurant. And nope not in a yoga studio either. Nor movies or a play.
Please be considerate and speak softly.
And if you are driving use a Bluetooth or other headset or in-dash device.
The life you save could be mine. Thank you very much.
Now before you get all weird. A Text is a great thing for sharing information I love being able to instantly let someone know I am running out the door see you soon.
It is not an activity for when you are driving.
Talking on the phone equals Connection. I don’t know about you but I get a lift when I speak to family and friends and I hear their voices. There is no substitute for the sound of the human heart as expressed in emotion and connectivity through the spoken, shared word. If we really listen you can hear so much of what is being said and what is left unspoken. No amount of Emoji’s is a substitute for the spoken word.
The sound of who we are what the heart feels that is what one hears in voice to ear, ear to voice communications. Is it possible we twenty-first-century beings are so overloaded that we are afraid of intimacy and of the time it takes, that we prefer a text to true heart-level conversation?
Here is a thought for this decade. What if the more we connect with others and truly get to know their heart, the more chance we have for living together peacefully. One person at a time.
So get radical.
Call a friend. Check-in with your family. Face-time them. Call someone. Surprise them. Set up your voice-mail. Go out on a limb! Whatever works. Just find your groove and make a move. Take the time to say “hi”.
Have intimate giggling, crying, sharing enjoying, heart-centered conversation. Even just for 5 minutes. Snuggle up with that phone of yours and call someone you love.
One caveat here: you might have to send them a text to tell them what you are up to.
Or share this with your friends and let them know it’s my fault you are calling them.
Go give it a whirl.
That’s so fancy.
Xo love and light.
Feel for the quiet kindness that’s inside you. Give it your attention.
It’s waiting patiently for the next place to be expressed.
–a mindfulness reminder from chill-app.com
#DavidByrneRemember that your thoughts aren’t you.
You’re the stillness that’s behind them.
–a mindfulness reminder from chill-app.com
Picture yourself radiating kindness. You’re aglow.
Let that kindness warm you, and the world around you.
–a mindfulness reminder from chill-app.com
What is your mind chasing after right now?
Notice the frantic chase, and then gently come back to yourself.
–a mindfulness reminder from chill-app.com
You’re moving around the sun at 70,000 miles per hour. Let that sink in.
You’re a part of everything that’s happening in the universe.
–a mindfulness reminder from chill-app.com