All About Belong.Life: A Free, Anonymous App for the Cancer Community

Welcome everyone to the final episode of the We Have Cancer podcast.  Glenn Hebert from the Horse Radio Network and Katie Krimitsos of the Women’s Meditation Network pay tribute to Lee Silverstein. For those of you that may not have heard, we lost Lee a few weeks ago and we wanted to do one final episode on the We Have Cancer podcast to honor what he meant to the cancer community and also to the podcast community.Katie and I will talk a bit about our time with Lee and then we want to play for you one of the final interviews that Lee did with the Man up to Cancer podcast where he talked about dying, hospice and how he was at peace.  Rest in Peace Lee, we all love you!

My buddy, Tim McDonald, joins me to share his story of dealing with stage 4 colon cancer and is journey to find a liver donor. Please help spread Tim's message by sharing this link: http://timsliver.com/Follow Tim here:On Twitter: twitter.com/tamcdonaldOn Instagram: instagram.com/timamcdonald On LinkedIn: linkedin.com/in/timamcdonald

Michael Riehle joins Lee to discuss his journey with colorectal cancer, the challenges of living NES (No Evidence of Disease) and the value of the Man Up to Cancer; The Howling Place Facebook group.

Lee provides an update on his treatment and shares exciting news. He discusses researching your treatment options and how to make treatment at a long distance facility a reality.

Welcome to episode #188, the final episode of the WE Have Cancer podcast.

On this episode of WE Have Cancer, motivational speaker and endurance athlete David Richman shares with Lee how cancer first touched his life through his late sister, June. To honor her legacy, David has completed countless races in search of connection, emotion, and perspective. Guest Biography: David Richman is an, author, entrepreneur, speaker, consultant and philanthropist. But before any of that, he was a brother to June. In 2007 June was battling her final stages of brain cancer, and David was ready to run beside her during Relay for Life. June passed away just days before the race, but David still went and ran. His experience at that race sparked a new passion in him for endurance sports for a cause. In the last decade, he has completed over 50 triathlons, over 50 runs longer than marathon length, and most recently, he biked 4,700 miles cycling across the country to interview participants for his new book exploring the emotional side of cancer, Cycle of Lives.Table of Contents:David's Story Begins with JuneDavid's sister June received news that she had serious brain cancer in her forties, and that it was most likely terminal. Her diagnosis changed everything. She was the impetus to David's project and nonprofit work, and remains his constant inspiration. What Would June Think of David's Work?June said the thing that sucked the most about her cancer was that she wouldn’t get to see her kids grow up. Through David's work, June is not forgotten, and her kids get to see her legacy continue to inspire connection. 5000 Miles on a Bike, Searching for AnswersInspired by June’s Relay for Life team in 2007 (called the June Buggies), David promised her he would run right alongside her. But June passed away just a few days before the race. Over time, David wanted to meet and interview all these people touched by cancer and bring them together. So he hopped on a bike and went city to city in a matter of six weeks.There's So Much HopeLee asks, was the biggest surprise while working on Cycle of Lives? David says he went into the project thinking it would be dark and heavy all the time, but he was surprised and inspired to find how hopeful and wise so many people were along the way.Seeking Connection Drives EverythingHow did David learn to dig deep and lean into these meaningful (and often challenging) conversations? He says he loves “trying to figure the puzzle out” when interviewing people, and finds true joy in doing so.“I was always on the outside looking in.” In his book Cycle of Lives, he talks a bit about how up until his thirties he felt like he was never the main character of his own story. He wanted to get out of the shadows and capture stories that would spread light, emotion, and inspiration, just like June.Why the Bike Ride, Instead of Picking Up the Phone?Dave says, “I think we’re all connected by stories, and we’re connected by emotion.” To him it felt natural and obvious to jump on his bike and ride from city to city to string everything...

On this episode of WE Have Cancer, awareness advocate and ovarian cancer survivor Morgan Gaynor chats with Lee about cancer research, advocacy, and sharing her cancer journey online in a very public way.Guest Biography: After completing her MBA at Monmouth University at age 30, Morgan decided to look into freezing her eggs. That decision would ultimately lead to her ovarian cancer diagnosis and save her life. Immediately after her diagnosis with low-grade serous ovarian carcinoma, she began sharing her story online on her website, Morgan Beats Cancer. Now a year and a half after her last chemo session, she currently serves on the board of STAAR Ovarian Cancer Foundation, and advocates on the federal, state, and local levels on behalf of ovarian cancer patients for increased research funding. Table of Contents:The Story Behind "Morgan Beats Cancer"Morgan says naming her site was a big decision and conversation with family. It’s not just about beating cancer herself; Morgan says her goal is to beat ovarian cancer for everyone. Sharing Her Cancer Journey with the WorldAt the time of her diagnosis, Morgan was four months out from her MBA graduation where she studied Communications. Her whole life Morgan has been an eager philanthropist and volunteer, and now she’s taking all of her skills and passions into the cancer world via her website and advocacy work.Diagnosed with Ovarian Cancer Pre-MenopauseShe first posted on Facebook about her ovarian cancer diagnosis, and how it wasn’t common for a woman in her early thirties to be diagnosed with it. She wanted to raise awareness that cancer can happen at any age. Morgan says, “If you’re born with ovaries, you’re at risk for ovarian cancer.”From Freezing Eggs to Finding Ovarian CancerAfter watching friends struggle with fertility in their twenties and thirties, Morgan decided she wanted to have her eggs frozen at age 30. At Morgan’s first ultrasound with the fertility specialist, they noticed several large lumps in Morgan’s pelvic area. A few weeks later, a surgeon confirmed the lumps were malignant, and she was diagnosed with stage four ovarian cancer.Treatment Options for Ovarian CancerMorgan says surgery was definitely the recommended immediate course of action for her. She had a debulking surgery first to remove all visible signs of disease, and then went through six rounds of chemotherapy afterward. Life After Cancer TreatmentMorgan’s final chemo session was in February 2020. She now takes a daily estrogen blocker because her particular strain of cancer was hormone-driven. She says she feels great.“My whole life is different now.” Between cancer and the pandemic, Morgan says she’s home much more than she used to be. She still spends time volunteering in her community, and she’s doing a lot with the ovarian cancer community as well. She joined the board of STAAR Ovarian Cancer Foundation, and is an advocacy leader with OCRA (Ovarian Cancer Research...

On this episode of WE Have Cancer, author and cancer survivor Katie Russell Newland chats with Lee about baseball, family, cancer, and learning to live in the moment. Katie shares how baseball was a special bond between her and her mother growing up. Three years after her mom lost her own battle with Colon Cancer, Katie was diagnosed herself. Two years later, Katie decided to dust off their old dream of road tripping to every ballpark in the country. Her journey later inspired her memoir, A Season with Mom: Love, Loss, and the Ultimate Baseball Adventure.Guest Biography: Katie Russell Newland is a writer and sports enthusiast with a PhD in language and literacy from the University of Texas at Austin. A survivor of both Hodgkin’s lymphoma and melanoma, she is now in remission and lives with her family in Austin, Texas. When she’s not watching sports or her favorite teams play (Chicago Cubs, New Orleans Saints, and Texas Longhorns), she can be found at a music festival, hosting a board game night, or playing pickleball.Table of Contents:Just Me, Mom, and BaseballKatie shares that her favorite baseball memories with her mom are the quiet moments watching baseball together at home, "just letting baseball do the talking." At their first Cubs game together, her mom had the idea to go and see all 30 ballparks together, just the two of them."My Mom's Strength Gave Me Strength"When her mom passed away, Katie stepped away from baseball for a while because it hurt so much to have to experience the game without her. Then, when Katie was diagnosed with Hodgkin's lymphoma and melanoma three years later, she reflected a lot about her mom’s strength and her own journey.Mom's Dream Came Alive AgainA year after her cancer treatment, Katie was diagnosed with a rare complication called Lhermitte's Sign, where radiation from her neck and chest crept in to her spinal cord, making it a challenge to take a single step. A year later, her mom's old idea came back: Katie wanted to see every ballpark, just like they'd planned. 108 Years of PatienceWatching the Cubs win the World Series in 2016 was magical, Katie says. Her mom wasn't around to see it, so Katie made sure to stay home alone, without distractions, to watch them win. She wanted it to be just her and her mom again, and she knows she felt her presence with her there."I Wanted to Live in the Moment"When Katie started her baseball journey she says she had no intention of writing a book; she started it as part of her own healing journey and a way to feel closer to her mom again. The book came a few years later.Living Her Dream, TwiceThen, Katie shares, reflecting back on her baseball journey to write the book was a whole separate journey in itself. She looked across thousands of photos from the trip, this time examining them from the perspective of a qualitative researcher. She was able to process the experience in a whole new way.Letting Go of ControlKatie says she learned a lot from cancer about letting go and learning to release the...

On this episode of WE Have Cancer, author and veteran physician Jim deMaine chats with Lee about facing death with peace and comfort. Dr. deMaine shares his knowledge on hospice and palliative care and the rights every patient should be informed on in regards to medical care at the end of their life. He also provides thoughtful advice for how patients and their family members can best prepare for their final days.Guest Biography: Dr. Jim deMaine is a pulmonary and critical care specialist passionate about educating folks about the options they face towards the end of their lives. He is the author of Facing Death: Finding Dignity, Hope and Healing at the End, in which he shares his wisdom and field experience to explore common questions and anxieties his patients have experienced in their final days. He does not shy away from conversations about the role of spirituality, leaving a moral legacy, cultural traditions, and even conflicts between patients and their doctors.Table of Contents:Saying the Words "Death" and "Cancer"At the start of the show, Lee asks why a pulmonary care doctor decided to write a book on death. When Dr. deMaine was training as a physician in the 1960’s, he says they were trained to avoid talking about death or even using the word “cancer,” and he knew he wanted to change that.A Patient's Rights at the EndHow do practitioners let their patients know that they have the right to make determinations about the kind of care they’d like to have at the end of their lives, and how can their doctors inform them about technologies available to them? Dr. deMaine discusses the many rights and conversations patients can, and should, be having with their doctors about end-of-life care.How to Put Families More at EaseFamilies feel better about conferences when the doctor listens more, allowing them to feel more understood, explains Dr. deMaine. He also talks about some touching notes and feedback he’s received over the years from patients and their families that have helped to teach him how best to comfort and inform loved ones.Leading the Conversation to Discuss DeathLee asks, why is what Dr. deMaine does “out of the ordinary” compared to standard practices of physicians in general? He shares about an app created for doctors called Vital Talk that coaches doctors on how to listen and approach these kinds of discussions, rather than sweeping them under the rug. There’s even a COVID-specific part. Learn about Hospice Before Needing HospiceDr. deMaine says patients should be informed about hospice options prior to needing hospice care themselves. Often, he says, people wait too long to consider hospice. How can patients begin to think about that level of special care earlier on?Benefits of Hospice CareMore than 50% of cancer patients receive hospice care at the end of their lives, and the data shows that people that enter hospice care have longer lives. Dr. deMaine admits that entering into hospice care is “quite a shift,” and is a decision that should be carefully considered.Palliative Care vs. HospiceWhat’s the difference between palliative care and

On this episode of WE Have Cancer, Oncologist Dr. Daniel shares how the free Belong.Life app is changing the lives of cancer patients and caregivers around the world. Belong.Life is both a social and professional network for managing and navigating treatments, with a mission to improve the quality of life and the quality of cancer care around the world through technology, engagement, data, and AI.Guest Biography: Dr. Daniel Vorobiof is the Medical Director of Belong.Life, creator of Belong – Beating Cancer Together, the world’s largest social network and navigator app for cancer patients, caregivers, and medical professionals. He is the founder and former medical director of the Sandton Oncology Centre in Johannesburg and has published more than 120 peer-reviewed articles in international medical journals. He formerly served as an executive board member of the International Committee of ASCO.Table of Contents:The Online Cancer Community Goes GlobalDr. Vorobiof explains that as a cancer patient, you have more questions than answers, and it’s hard to know what to do or who to trust. Belong is a “GPS for cancer patients.” It’s a social network for support and navigating the treatment of cancer. The App is Safe, Free, and PersonalizedBelong is an international application, it’s free to use, and completely anonymous. All your private information stays private. You can choose which groups you want to be a part of in the app, according to the diagnosis you have and the circumstances that apply to you.Serving Over 300,000 Patients WorldwideDr. Vorobiof says, “I wasn’t looking for a new career in my life, but this was the opportunity for me.” In 40 years as an oncology practitioner, he estimates he treated 20,000-30,000 cancer patients. Now with Belong, he has over 300,000 patients all over the world after just four years on the app.The Comfort of Anonymity Since the app is anonymous, patients can ask questions they might be afraid or embarrassed to ask in person or with family members present at a regular doctor's visit. Plus, caregivers can be active on Belong too; an estimated 20% of the app’s total 400,000 users are caregivers.Surveying the Cancer Community about COVID VaccinesJust three days after sending out a survey to the app users about how they were feeling about the COVID vaccines, Dr. Vorobiof received over 1000 quality responses. Detailed findings are still being combed through, but he says 96% of responders said they’d had the vaccine, and 4% reported they did not want to receive it.Making Sense of Clinical Trials with Belong.LifeThe app bridges a huge need in the cancer community in regard to clinical trials with its Clinical Match feature. Taking in a person’s information (de-identified to remain anonymous), the app can match someone with any clinical trial/s they may be suited for.Bringing Community & Cancer Support to the 21st CenturyReceiving support on the online app is simple and intuitive. Emotional support is crucial for both patients and caregivers. Everything from education to emotional support can be found on Belong, all of which is...