The Inside Press

Magazines serving the communities of Northern Westchester

Cover Stories

Families Working Together Against Pancreatic Cancer

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Zabeen Mirza as a young girl with her dad Dr. Zobair Ahmed

Efforts Geared Toward Goals of Earlier Detection and Better Survival Odds

Chappaqua resident Zabeen Mirza was in middle school when she first heard the words “pancreatic cancer”.  It was a dramatic discovery–her healthy, active father, an anesthesiologist at Memorial Sloan Kettering, had suddenly keeled over in pain and was found lying on the floor. Less than six months later, and only 40 years old, he had succumbed to the devastating disease. 

“It was awful–just incomprehensible to know that my father was literally surrounded by the best and the brightest minds in oncology–and they were all helpless, with no answers or treatment,” said Mirza. “We felt such powerlessness, despite all the brilliance and access we had. And there was nowhere to turn for support.”

Ironically, the same year her father passed away, 1999, was the year the Pancreatic Cancer Action Network (PanCAN) was established. With a vision to create a world in which all patients with pancreatic cancer will thrive, the organization focuses on improving the lives of everyone impacted by pancreatic cancer by advancing scientific research, building community, sharing knowledge, and advocating for patients.

“If PanCAN existed while we were going through this with my dad I can’t imagine how the trajectory of my life would be different,” said Mirza, who is now an Event Experience Chair for PanCAN’s annual Purple Stride event, which will be held virtually this April with a goal or raising $290,000. “This organization is truly a lifeline to those battling this unrelenting disease and their families, right from the point of diagnosis. Even if your loved one is no longer with you, PanCAN is there for support.”

A pancreatic cancer diagnosis is devastating, with limited treatment options and a five year survival rate of only 10 percent. There are no early detection tests, no effective long-term treatments and, unless the cancer is surgically removed in its earliest stages, no chance for cure. 

The American Cancer Society’s estimates that, in 2021 alone, over 60,000 people will be diagnosed with pancreatic cancer, and nearly 50,000 will die of the disease. Accounting for about 3% of all cancers in the US and 7% of all cancer deaths, the biggest obstacles continue to be early detection and treatment.

Often referred to as a silent killer, symptoms are rarely noticeable in its early stages if they are present at all. They are often vague and can be easy to ignore, making it a challenge to recognize and diagnose. The pancreas is located deep in the abdomen, so tumors are rarely felt or found during a physical exam. Doctors may use a barrage of generalized tests to make a diagnosis but there is STILL no standard test to specifically diagnose pancreatic cancer, complicating matters even more. It is often diagnosed at an advanced stage because its symptoms (back or stomach pain, bloating, gas, new-onset diabetes) mimic other conditions. Some people carry genetic mutations, including BRCA, that put them at higher risk of developing this disease. There are also some lifestyle risk factors, such as smoking and obesity. 

For Rye resident Tara Shanes-Knebel, it took many months, countless hospital stays, and a litany of frustrating tests to reach her mother’s diagnosis in 2008. 

Tara Shanes-Knebel with her mom Gigi Shanes-Hernandez

“While pancreatic cancer has some common risk factors, my mom did not have ANY–no family history of the disease, she did not smoke, she did not drink, and was a vegetarian- pancreatic cancer was a total shock to our family,” she says. 

 Like many, her mother’s symptoms were not obvious and developed over time–abdominal pain, loss of appetite, unexplained weight loss, change in stool, and jaundice. By the time she was diagnosed, and after a formidable battle, she died just 11 months later at age 51.

“I was only 25 years old when my mom was taken away from me by pancreatic cancer. She was an amazing mom, wife, friend, daughter, and dedicated her life to helping others. She was taken from us too soon,” she says. Fueled by her mother’s drive and devotion, she continues her fight. “The night before my mom died, she told me she was going to ‘bring a victory flag to Washington, D.C.’ by fighting and surviving this horrible disease. I am now dedicated, in her memory, to awareness and advocacy for pancreatic cancer, as well fundraising to advance research and patient support to help others.”

Tara holding a banner for the Westchester Pancreatic Research Walk she founded.

To honor her mother, Shanes-Knebel created and organized the Westchester Pancreatic Cancer Research Walk in 2010, and the annual walk continues today. She partnered with the Lustgarten Foundation, the world’s largest private funder of pancreatic cancer research. Since its inception, the event has raised over $4,000,000 in Westchester alone for pancreatic cancer research. 

Let’s Win! Pancreatic Cancer annual event from 2019.
(L-R) Mike Greenstein, Jackie Greenstein, Rob Greenstein

The Lustgarten Foundation is also affiliated with Let’s Win! Pancreatic Cancer which helps educate patients about treatment options and provides hope for patients and families. This particular organization is close to the heart of Rob Greenstein, a Chappaqua resident who lost his sister Jackie to Stage IV pancreatic cancer last year. She was only 56 years old.

“Let’s Win! was co-founded by Jackie’s oncologist Dr. Allyson Ocean with a goal to get the latest science to doctors and patients in real time,” says Greenstein. “Pancreatic cancer that is diagnosed earlier is more treatable, so there is research focused on earlier detection, through blood tests, or monitoring of people that carry the genetic mutations or have a family history of the disease. There are clinical trials becoming more and more available–patients should not be afraid to get second opinions and look for trials that may help them.”

Currently, radiation and chemotherapy are used to prolong life, but low quality of life and high morbidity rates show that there is so much more to do. Research has made small but important  gains in recent years, drawing more attention, and subsequently more funding with high profile cases such as Alex Trebek and Ruth Bader Ginsburg. 

Advances such as immunotherapy, blood tests for early detection, genetic testing and molecular profiling of tumors and a slightly increased survival rate give families, patients, doctors and researchers hope. Funding alone has increased by over 900% in the past 10 years.

“Things are getting better, but the statistics are still grim,” says Mirza. “At PanCAN we often say we ‘wage hope’. This hope needs to be continuously kindled until we have beaten this deadly disease.”

UNDERSTAND YOUR DIAGNOSIS. ASK YOUR DOCTOR:

  • What type of pancreatic cancer do I have?
  • What tests and scans will you use to confirm a pancreatic cancer diagnosis?
  • Where in the pancreas is it located?
  • What is the stage?
  • Has it spread to other organs?
  • What treatments do you recommend? What choices do I have?
  • How many people with pancreatic cancer do you diagnose each year?
  • Can my tumor be removed through surgery? Why or why not?
  • Should my family and I be tested for hereditary pancreatic cancer?

GET A SECOND OPINION:

Always ask for a copy of your medical records and lab results, including:

  • CT scan
  • CA 19-9
  • MRI
  • EUS
  • ERCP
  • Biopsy results

RESOURCES:

Let’s Win! Pancreatic Cancer: letswinpc.org

Lustgarten Foundation: lustgarten.org

PanCAN: pancan.org

American Cancer Society: cancer.org

Byram Hills Administration Shares How the District Achieved In-Person Classes Despite the Pandemic

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And the keys to success meeting unprecedented challenges…

PHOTO BY CAROLYN SIMPSON

Bravo Byram Hills! Facing unprecedented challenges due to Covid-19, the Byram Hills School District has risen to the occasion successfully implementing a well-laid plan for the safe education of our children. Despite an abrupt shutdown of schools in mid-March with no handbook on how to remotely educate an entire district, things are now running smoothly with a mixture of in-person (K-6), hybrid (7-12), and remote instruction (K-12 option). The magnitude of this accomplishment cannot be overstated when many of the nation’s schools were unable to reopen and remained completely remote this school year.

“The Eye of the Storm”- The First Few Weeks

In mid-March, when Covid-19 forced a historic shutdown of our schools, Byram Hills administrators and faculty kicked into high gear to try and provide a semblance of normalcy and continuity of education for students.

“It felt like we were in the middle of a storm,” recalls Dr. Jen Lamia, Superintendent of Schools. “We were trying to support teachers who were out remotely for the first time, trying to deploy Chromebooks to support parents, trying to get curriculum and technology up and running, and it was incredibly difficult.”

Initially, no one knew how long schools would be closed because school districts were awaiting instructions from the governor. “We made decisions based on temporary status,” says Dr. Tim Kaltenecker, Deputy Superintendent. “We would’ve made different decisions, such as having a schedule, if we knew it was going to be long term. So, we took those lessons learned from the spring, we surveyed the community, the students, and faculty, and used much of that information to start planning for September.”

“We had no idea we were in that lull and things were going to continue to get worse,” says Lamia. “However, once we realized this will be somewhat permanent, we moved our minds to preparations for the fall.”

“Pots on a Stove” – Preparing for the Fall

“We watched our K-6 learners struggle in a remote setting, so our number one goal was to get K-6 back in school, socially-distanced, and then to identify curriculum, so Tim, Gina Cunningham (Assistant Superintendent for Human Resources), Kelly Seibert (Assistant Superintendent for Business and Management Services) and I started this work,” explains Lamia.

To bring students back, the administration had to tackle a myriad of details related to building operations, curriculum, instruction, personnel, technology, and safety. Every building and every grade level had its own challenges to address. “We had a lot of pots on the stove, we had different urgent items that we needed to tend to for things to run well,” says Lamia.

Communication was key. The process involved talking with teachers and staff to ascertain what they needed to feel safe to return, talking to parents about what worked for their children in remote learning in the Spring, talking to students about how instruction could be enhanced, and conversations with the Byram Hills Education Foundation (“BHEF”) about how they can support the District with the technology needed. 

Separate task forces and sub-committees of faculty and administrators for K-5 and 6-12 were convened to make curriculum decisions. A Strategic Planning Committee was formed to keep everyone on schedule and ensure they were meeting benchmarks.

“Our students are at the center of our decision-making,” says Kaltenecker “our teachers were consulted every step of the way.”

Administrators worked around the clock to prepare for all scenarios. “While awaiting guidelines from the state, we planned three different models including a plan for all students in school with safety precautions, a hybrid plan, and an all remote plan,” explains Kaltenecker. “We needed to be ready because we wanted to bring in as many kids as possible for as much time as possible.”

The work paid off because Byram opened its doors on September 1, 2020 with K-6 students attending daily and grades 7-12 attending in a hybrid model. School was able to proceed because schedules were adjusted to cohort students as much as possible to de-densify classrooms, custodians prepared the buildings to meet public health guidelines, the BHEF supplied classrooms with cutting edge technology for synchronous hybrid learning, and all staff were determined to make this work.

The Importance of a Well-Prepared Team

This herculean effort could not have been undertaken without the strong foundation that had been built by the administrative team. Lamia and Kaltenecker have been working together and refining their organizational plans since 2003. “We’ve had a lot of practice in doing this sort of planning and thinking work, just never of this magnitude,” says Lamia.

“Because of our relationship, I trust Jen with my life so when we’re making these decisions…I know they’re with good intent for the district,” says Kaltenecker. “Fifty percent of our administrative team has been here a long time, we’ve studied leadership texts together, and we have a good language built in our system that helped us as we were designing this.”

“The message from Jen that was consistent whenever people were wavering, was ‘Our children need to be in school. We have to bring them back day one. How do we make that happen?’ 

And that was our mission,” says Kaltenecker.

“We worked very hard on this, but it’s our faculty, staff, and administration that made this happen because of their care for our children. They built it,” emphasizes Lamia.

Throughout the planning and execution of this effort, leadership consulted with a stakeholder group comprised of physicians, hospital administrators, a military veteran trained in strategic planning, nurses, principals, town supervisors, members of the board, members of the teacher’s union, and PTSA. “This group was incredible,” says Lamia. “It occurred to me that if I’m going 

to move forward with opening schools, I need experts to weigh in, I need studies, I need organizational plans, and I need input from all stakeholders.”

Moving Forward with Lessons Learned

Much has been learned both about the ever-evolving science on Covid-19 and on a smaller scale, about educating the students. This past fall, in accordance with Department of Health guidelines, any child that had been in a classroom or on a bus with a Covid-positive person was instructed to quarantine for fourteen days. In December, the NYS Department of Health reduced the quarantine to ten days for exposed individuals. Also, since there have been no known cases of quarantined individuals becoming symptomatic, purportedly due to the vigilant adherence to social distancing practices, the district is not casting as wide a net when identifying exposed individuals. Only “close contacts” are directed to quarantine.

Looking ahead, the administration is discussing lessons they have learned, practices they may want to continue in a post-Covid life, things they may want to tweak, accessing vaccines for the district and arranging testing for everyone. For now, the district has facilitated weekly surveillance testing of twenty percent of students and staff using the Mirimus saliva-based PCR tests.

“If I had a gift,” says Lamia, “it would be to receive enough rapid PCR tests for every adult and student in the schools to take every Monday morning at home, so I knew with assurance that at that snapshot in time everybody was coming in Covid-free. That would be the most beautiful gift to take us from now forward.”

In the meantime, students and parents are grateful to have school in session. In a recent board meeting, Wampus Elementary Principal Peggy McInerney remarked on how appreciative the kids are to be in school. That is what makes it all worthwhile.

New Role for the Ever Versatile Ronni Diamondstein

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Ronni Diamondstein and Maggie Mae  Photo by Carolyn Simpson

It’s Cuomo time!” Ronni Diamondstein calls to her best friend and pet poodle. 

The sound of dog tags jingling signals the incoming arrival of Maggie Mae, the 13-year-old black and white parti toy poodle, who jumps up on the couch, snuggles up next to her mom and watches Governor Cuomo’s daily coronavirus briefings on the TV. 

The middle of March 2020 meant that quarantine was in full-swing and the only thing set in stone was Maggie Mae getting a treat at 11 a.m. right before Cuomo was about to start. 

If you know Diamondstein, then you know Maggie. The two of them have been inseparable ever since 2008, when the dynamic duo began. You’ve probably seen them in town on walks or maybe you’ve even seen Maggie painted on the Chappaqua Children’s Book Festival mural. 

Although they were seemingly attached at the hip before, if this pandemic has done anything, it has brought the two of them even closer together. 

“We got into new routines…Having another living creature in the house is comforting,” 

Diamondstein said. “She’s good company, she’s funny and she has very good self-esteem. I like when she walks in town; she has a good sense of herself. She’s a lot like me in that she likes her alone time but she also likes to see people. And she’s also very curious.”

Maggie is basically a town celebrity. She loves walking around town and checking in on her favorite merchants, ensuring that everyone and everything is just the way it should be. She must’ve gotten that from her mom, for Diamondstein puts a lot of effort into making this town even greater than before.

The philosophy “make where you are  better because you’re there” is one that Diamondstein has tried to follow her whole life. Whether it be in Chappaqua, White Plains or the Netherlands, she has strived to make an impact wherever her time is spent. 

It’s safe to say that mission has been accomplished over and over and over, starting every single morning on Facebook. 

Social media these days can be a source of unwanted negative energy or controversial content, leaving many of us with the urge to drop our phones at the bottom of a lake and never see them ever again. But if you become friends with Diamondstein on Facebook…you might change your mind!

She starts each morning by posting an inspirational quote as a way of communicating her thoughts and getting her friends to think about certain things. You know what they say, a quote from Ronni a day keeps the doctors away! 

The quote that inspired her way of life? 

“Ask not what your country can do for you, ask what you can do for your country.”  – John F. Kennedy

And inspire her way of life it did, even early on, as Diamondstein won her high school senior award for excellence in service. But her passion for helping her community didn’t stop there. It just got started. 

After vacationing in the Netherlands, she ended up getting a job as a school librarian at an American international school where she started a gifted program. Working at one of those schools had always been a dream of hers. 

A few years later, she came back to the states and settled in Westchester, where she was a library media specialist in the White Plains schools for 20 years. Among other things, she has served as the Chairman of the Adult Education Committee at Temple Beth El, Board Member of the Chappaqua Children’s Book Festival, League of Women Voters of New Castle and the New Castle Community Media Center, creative behind the Maggie Mae Pup Reporter Column, member of the New Castle Council for Race and Equity and the Katonah Museum Artists’ Association, provider of beautiful nature photos for local exhibits and more. 

“And now, the most amazing thing that I am doing, because libraries have been my life’s work…In 2017 I was elected to the Chappaqua Library Board and as of October, I’ve been the acting President…” Diamondstein said. 

Since January, Diamondstein has served as the President of the Chappaqua Library Board for the ‘21 year. 

“I’m very humbled to have this responsibility. I’ve worked very hard as a board member, in looking at really taking my responsibility seriously…I’m very optimistic about how things will go.” 

She pitched the idea of having MSNBC political analyst and author Rick Tyler speak at the library, offering to do the interview herself since she is a seasoned journalist. The idea was well-received and in January, she interviewed Tyler over Zoom about his new book. 

“I told Joan Kuhn, the program director, that she’s made one of my dreams come true. I always wanted to do what Barbara Walters did, interview people like that on television…I’m really excited about it.” 

Throughout the last year, the library has seen some major changes with their renovations and of course, the pandemic. With curbside pickup, new online book discussions and even a website feature that allows you to chat with a librarian, the library “has done a great job of connecting with the community.” 

Eventually, Diamondstein is hopeful that more kids and teenagers will gravitate toward coming back to the library due to a brand new teen area with new technology similar to the kind that is provided at school. 

Being in the book biz, her favorite one is a children’s book about a dog. It’s called Dominic by William Steig and it’s one she thinks every adult should read, saying “it’s just really a story about life.” She gives it as a gift often, even giving one to President Clinton at one point. 

Throughout the pandemic, while reading is probably an activity that was done to combat quarantine, Diamondstein has been keeping busy doing other things as well. Whether it’s baking her Amazing Double Chocolate Brownies, speaking to at least two friends daily or doing Facetime Pilates, she “just [took] one day at a time.” 

“Peonies”, one of Ronni’s favorite flowers that she photographed at the NYBG was an entry in the Katonah Museum of Art Artists Association Member Show in November 2019.
Photo by Ronni Diamondstein
© 2019 Ronni Diamondstein, All Rights Reserved

The way Diamondstein saw it was, “You had to find joy every day during this pandemic in the little things.” 

Perhaps the most important little thing to happen over these last months? 

Maggie Mae’s Bark Mitzvah! Mazel Tovs are in order in the Diamondstein household because Maggie Mae officially became a young lady in October during Temple Beth El’s Noah’s Bark service. People hopped onto the Zoom call with their pets and Maggie got to celebrate with her friends and family which hopefully made up for the fact that “she has noticed that people, nobody pets her when [she] goes for walks anymore…” 

While Diamondstein is lucky to be able to celebrate the little moments during these times, she also recognizes that there are others who are struggling. This past June for her birthday, she raised over $3,000 for Feeding Westchester to support her concern of food insecurity problems that only grew with the pandemic. In the past she has also helped fundraising efforts for the Amy Marie Crabtree Foundation and the Leukemia & Lymphoma Society. 

Although there are currently no longer daily Cuomo briefings for Maggie Mae to watch, at least there are three things we can still rely on: Diamondstein gets flowers every week from Whispering Pines in town, which remind her of her time in Holland, she has switched out the Brownie Starmite camera for her iPhone 11Pro but is still taking photos of flowers and she is still doing everything she can to make a mark where she lives. 

Which makes us wonder…what will she do next? 

Hickory is wood, Tweed is wool

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Catching up with Sports Enthusiast Skip Beitzel, the Iconic owner of Hickory & Tweed

Photo by Carolyn Simpson

Skip shared with me his love for Armonk and feels blessed to be a staple in our community.

The architectural touches, colors, and Stowe-like feel of their building is true and will remain everlasting as his family-run business will one day be passed down to future generations.  

Skiing is the new biking. 

Do you remember when bicycles were spinning off the shelves like hand sanitizer back in April/ May of last year? When inventory was low, factories were shutting down, trying to find a spare part was impossible, and asking someone if they had a bike rack for sale was a laughable offense? Well, reservations and bookings showed that the 2020-2021 ski season was going to demand the same. There was no break for employees or suppliers between the seasons as the bikes were still out while the snow started to fall. Skip was heavily focused on “getting through the winter.” Skiing was top of mind. 

In charge of buying and merchandising, Geri Moore, Debbie Coldwell, and Skip’s wife Michaela hustle to refresh and restock their downstairs inventory, while listening to the sound of boots banging on the floor above as skiers and boarders rush the store for fittings. 

Hickory and Tweed has a narrow and deep product philosophy, “carry what we love, know why we love it, and our customers will trust us.” The store has been carrying the Patagonia brand for 35 years, and Bogner is going on 60 years. “Hold tight, Jennifer we’re just jamming here,” he insists in a genuine soft-spoken mixture of tones, Skip’s phones were ringing off the hook. And they were not going to stop anytime soon…

It wouldn’t be long before it was bike season again. “We have a lot of dedicated bikers here,” Skip explains to me. As an avid user of his electric bike, Skip sometimes uses it to get back and forth to work. With pedal-assist, he can crush the massive hills and arrive at the shop sweat-free. These too were and still are in high demand. Waiting for suppliers to get restocked after last year, I learned it has been a slow build of inventory but it will in fact be ready and available for you and your family.

Skip is active.

When he’s not praying for snow in Armonk, he is praying for waves in Ocean City, NJ. Skip has been a surfer for over half of a century. He CAN snowboard, but prefers his two legs to work independently (via skis). He also skateboards. In fact, back in 1977 Skip built the first skateboard park in the northeast, it was called Wonderwave. Any 1970s skaters out there?? You knew this place. 

Wait, I’m not done… in his free time, Skip goes on an annual, consecutive trip to Alta with the same group of friends every year since 1968; that is 51 years of awesome with, believe it or not, the employees he met when he first started working at Hickory and Tweed (lift jaw now).  

Today, Skip celebrates his 36th successful year of ownership.

Feeling inspired? 

In Skip, We Trust.

Behind ‘Team Katz Fights Cancer’

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… and a Goal to Raise $50,000 to Fight Blood Cancers

By Spencer Katz

In 2008, I turned four years old. That was the year I had a Backyardigans-themed birthday party and dressed up like Batman for Halloween. It was also the year that I first hear the word “cancer” because that was the year that my mom was diagnosed with lymphoma, a form of blood cancer. I was only in nursery school and too young to really understand the impact of this diagnosis. But I watched as my mom underwent months of chemotherapy, lost her hair, and fought to survive. Luckily, she did survive. 

 Now that I am 16 and a junior at Horace Greeley High School, I understand the impact of a diagnosis like my mom’s. I have been heartbroken as too many of my friends lost parents to blood cancers like leukemia and lymphoma, and I have watched many others fight for survival. And blood cancer, specifically leukemia, is the most commonly diagnosed form of cancer in children and young adults. So I decided to take action to find a cure for blood cancers.

Spencer and his mom, Lisa Katz, a lymphoma survivor

When I was nominated as a candidate in The Leukemia & Lymphoma Society’s (LLS) Students of the Year campaign, I knew that this was the perfect opportunity to raise funds and awareness for the fight against blood cancers. Students of the Year is a seven-week philanthropic competition for high school leaders seeking to make an impact in the fight against cancer. I joined the campaign in honor of my mother and all those who currently are fighting blood cancers, and in memory of those who have lost those battles. 

 This year’s campaign begins on January 21st and ends with a grand finale on March 11th. The funds raised benefit the LLS mission to find a cure for leukemia, lymphoma, and myeloma, and to improve the quality of life of patients and their families. And it can help so many others too–many treatments initially developed for blood cancers are now also helping people affected by many different types of cancer. Since the campaign’s inception in 2014, the Students of the Year program has made an incredible impact for cancer research, patient aid, and community outreach programs.

I am so honored to be able to represent Horace Greeley High School and our entire community in this campaign.

 I am aiming high and have set a goal of raising $50,000 to find a cure for blood cancers. Yes, I know that this is an extremely ambitious goal, but I am determined to leave my mark on the fight against cancer to the best of my ability. And I have the legacy of so many loved friends and family as the motivation behind my campaign. My campaign will provide support to the critical work of LLS in hopes that one day no one will have to watch a loved one suffer and fight to survive, or worse, grow up without the ones they love.

 Not only is Students of the Year a great way to support the Leukemia & Lymphoma Society, but it is also a great leadership experience for me. Being part of this campaign means so much to be, and I am proud to help my generation be the last to see cancer. I can’t wait to share the exciting updates of the next seven weeks with you. Stay tuned to see what my team and I can accomplish. 

 If anyone reading this feels as I do, it would mean a lot to me if you would consider becoming part of the cure and making a donation to my campaign. To donate online or for more information, please visit my fundraising campaign website Team Katz Fights Cancer!

 And please email me at TeamKatzFightsCancer@gmail.com to share stories of your loved ones impacted by blood cancer. I would love to add them to the list of those I am fighting for. I truly hope that together we can make a true difference in the lives of cancer patients and their families, not just in our community, but everywhere.