MDS, AML, Liver Failure. We Ran It Like a Startup.

MDS, AML, Liver Failure. We Ran It Like a Startup.

Heidi Kay Carson's husband Chad was 46, healthy, and holding a PhD in computer science when a routine blood test set off a 14-year medical odyssey that ended with two simultaneous organ failures and no US hospital willing to treat him. In this episode, Heidi walks through the decisions, the dead ends, and the unconventional moves that got them further than anyone said was possible, and what she has built since Chad passed in 2019. In this episode, they dive into: * How needing a liver transplant and a bone marrow transplant at the same time created a catch-22 with no protocol, Chad was removed from the US liver transplant waiting list the day his bone marrow failure was confirmed, forcing them to find a completely different path * Why they flew to Korea for a living donor liver transplant,  South Korean hospitals were performing 400+ living donor liver transplants a year when US hospitals were still treating it as a last resort, and Heidi became Chad's donor herself * The startup framework they used to run a terminal diagnosis , most startups fail, they knew that, and they applied the same thinking to a poor prognosis P53 mutation: put every resource, connection, and decision toward beating the odds rather than accepting them * The clinical difference between a liver transplant and a bone marrow transplant that most caregivers don't grasp going in,one is a parts swap, the other rewrites every system in the body, and the recovery gap between Chad's two transplants was only four to five months * What Heidi learned about caregiver sustainability during six weeks in a Korean ICU with no support network ,the specific things she did to stay functional, and why she believes the disease affecting two people instead of one is always the worse outcome * How telomere biology disorder goes undiagnosed for decades , Chad's first abnormal blood result was in 2005 and the underlying cause was not identified until years later, because the classic external markers were absent and most clinicians had never seen it * What Team Telomere has built since Chad's death,  updated clinical guidelines now driving a measurable uptick in diagnoses, two active clinical trials that did not exist when Chad needed them, and the Carson Family Research Award funding the next shot on goal Listen to more episodes:  Apple  [https://podcasts.apple.com/us/podcast/kicking-cancers-ass/id1823273873] Spotify  [https://open.spotify.com/show/02RPxWUmUpgOjMo38cCOL6?si=51aab9d8a45b49ac&nd=1&dlsi=e32a6038823945e2] YouTube [https://www.youtube.com/@KickingCancersAssPodcast] Website [https://joellekaufman.com/]

Chemo Ended. Two Weeks Later, I Hiked Zion.

Two weeks after her last chemo infusion for HER2-positive breast cancer, yoga teacher Larissa Noto hiked Zion National Park. Her oncologist found out about the trip mid-call when she mentioned she was already in Vegas. Joelle Kaufman talks with Larissa Noto, founder of The Lovely Little Lotus. Larissa spent years as a corporate attorney before pivoting into a full-time career teaching yoga and mindfulness, and now serves as Director of Teacher Trainings at The Yogalo in Pennsylvania. In December 2024, one month after her father was diagnosed with prostate cancer, Larissa was diagnosed with HER2-positive breast cancer. She was treated at Lehigh Valley Health Network with second opinions from Memorial Sloan Kettering and Fox Chase. Her treatment included active chemotherapy followed by a full year of Herceptin and Perjeta, plus a lumpectomy with axillary lymph node work. She did not have reconstruction. Larissa walks through how she kept teaching through chemo, why she did not quit the teacher training program that began the day after her diagnosis, and why journaling and mindful breathing carried her through the worst of it. Joelle shares her own story of chasing pathology slides through a hospital basement, working with a psycho-oncologist, and cold capping to keep her hair through chemo. In this episode: how to control the narrative when cancer is rewriting your life, why anger is just fear wearing a costume, the wall of wigs Larissa's three sons named (including the pink curly one she rang her bell in), and the one question Joelle asks every guest. Larissa Noto is the founder of The Lovely Little Lotus and Director of Teacher Trainings at The Yogalo. She is writing a book on breath work through the trajectory of life. Full article and resources at cancercurveballslugger.substack.com [cancercurveballslugger.substack.com]. Kicking Cancer's Ass moves people from powerless to powerful through real stories, cutting-edge science, and proven strategies. Listen to more episodes:  Apple  [https://podcasts.apple.com/us/podcast/kicking-cancers-ass/id1823273873] Spotify  [https://open.spotify.com/show/02RPxWUmUpgOjMo38cCOL6?si=51aab9d8a45b49ac&nd=1&dlsi=e32a6038823945e2] YouTube [https://www.youtube.com/@KickingCancersAssPodcast] Website [https://joellekaufman.com/]

She Pulled Up My Breast MRI. I Wasn't Even Dressed.

Why does the second cancer hit harder than the first? Even when it’s smaller? Even when you’re a psychotherapist? Dr. Erin Gray, two-time cancer survivor (BRCA2 breast cancer in her early 40s, then thyroid cancer eight years later), had her own answer when it happened to her. The thing that separates the diagnoses you survive well from the ones that wreck you isn’t preparation. It isn’t knowing what comes next. It’s a guide. In this conversation, Erin walks through both of her diagnoses, what changed between cancer #1 and cancer #2, the question that comes before every other one when you’re newly diagnosed (or carrying a known mutation, or facing a recurrence), and what patient navigation (a clinical intervention with thirty-five years of outcomes data) does, plus why most patients never get to experience it. Also in this episode: the breast MRI moment where the radiologist pulled Erin aside before she could even get dressed; why her oncologist told her not to Google “triple negative” and what proved him right in the chemo room; the 28% lower recurrence risk from 150 minutes of cardio a week; and what no one tells you about the second time around. Dr. Erin Gray is a psychotherapist specializing in patients with chronic illness, co-host of Wicked Psychotherapists, and author of Crushing the Cancer Curveball. Erin’s counseling website: www.bewellwithincounseling.com [www.bewellwithincounseling.com]Erin’s podcast website: www.wickedpsychotherapists.com [www.wickedpsychotherapists.com] Kicking Cancer's Ass. We never chose the pitch, but we always choose the swing.   Listen to more episodes:  Apple  [https://podcasts.apple.com/us/podcast/kicking-cancers-ass/id1823273873] Spotify  [https://open.spotify.com/show/02RPxWUmUpgOjMo38cCOL6?si=51aab9d8a45b49ac&nd=1&dlsi=e32a6038823945e2] YouTube [https://www.youtube.com/@KickingCancersAssPodcast] Website [https://joellekaufman.com/]

The Most Common Cancer Post on Reddit Has Three Words

Everyone said Joelle was done with cancer. She wasn't. Three years past her pathologically complete response, she has a urologist, a cardiologist, and an annual abdominal CT scan she'll get for the rest of her life. The word done was on the chart. It was not on the calendar. And she's one of the easier cases. The most common cancer post on Reddit is some version of three words. Done. Now what? One thread pulled 143 upvotes and 115 comments under the title "In a weird in-between. What do I say to people now?" Not a single physician answered. The thread is just survivors trading the answers their care teams never wrote down. In this solo episode: what the research actually says about post-treatment depression and anxiety five years out, why fewer than half of patients receive the survivorship care plan the Institute of Medicine recommended in 2005, the cardiovascular risk nobody warned her about, and the three moves she made to live inside the in-between instead of bracing through it. Plus the Fuck Cancer World Tour, the recast of the annual CT scan, and the grandmother who danced with her grandfather at their 50th anniversary three weeks before she died. You're not done. That's not a failure. The calendar is yours. Full subscriber deep dive at cancercurveballslugger.substack.com.

Episode 46: She Didn't Ask What I Needed. She Already Knew.

Twenty-five years of friendship trained Jessica Rosenbaum for the call she didn't want. When Joelle was diagnosed with triple-negative breast cancer the day before her preventative mastectomy, Jessica didn't ask what Joelle needed. She'd already designed the role only she could fill. Jessica Rosenbaum, PhD, is a licensed clinical psychologist and Joelle's best friend of 25 years. When the BRCA-related diagnosis came, Jessica became the coordinator of an entire support architecture. She set up the meal train and the chemo driver schedule, but didn't take those roles for herself. She kept the workout slot. Three mornings a week in Joelle's home gym, lifting heavy weights together. Her reason: she'd been Joelle's training partner for almost two decades and was the only person who could read what was actually happening to her under a heavy bar. The conversation covers the day Jessica had to cancel a party without saying why, the original Bye-Bye Boobies sendoff that got pushed four months, the moment they realized chemo wasn't taking Joelle's strength, the surgeon (Dr. Merisa Piper at UCSF) who approached DIEP flap reconstruction like an artist with a canvas, the kintsugi reframe that let Joelle see her scars as beautiful, and the research on why exercise during chemo measurably improves treatment outcomes and reduces recurrence. In this episode: how to design a support role instead of asking what's needed, why "how are they doing?" is a kindness that costs the patient something, what 25 years of paid attention earns you when the call comes, and Jessica's own answer to the question Joelle asks every guest. Jessica Rosenbaum, PhD, is a licensed clinical psychologist who works with parents and children on how children learn. Full subscriber deep dive, with research on social support and cancer outcomes, on www.kcapodcast.com.