Episode 51: Cancer Wasn’t the Hardest Part. My Friends Were.

Episode 51: Cancer Wasn’t the Hardest Part. My Friends Were.

The Thing Nobody Warns a Man About Joelle ended the episode with a lightning round. One or two words per answer, quick as she could ask. Then she got to this one: complete the sentence. The thing nobody warns a man about cancer is _______. Three men. Four time zones between them. Not one of them paused. Loss of friendships. Don said it first. Michael said “yep” before Don finished the word. Jay explained it the way only someone who lived it can: when you get diagnosed, the people back home either step up or they disappear. Nobody hands you that brochure. We talk about scans and ports and the language of fighting. We don’t talk about the friend who stops texting back because your diagnosis scares him and he doesn’t have the words, so he just goes quiet, and one day you realize he’s been quiet for months. Don, Michael, and Jay are three members of Man Up to Cancer, a nonprofit built on a simple, almost rude idea: men are smarter and stronger as a pack than as lone wolves. Don has beaten cancer three separate times. Michael was told his stage four was inoperable and went and got a second opinion anyway. Jay was diagnosed at 36, in the middle of the pandemic, doing chemo essentially alone while his wife Zoomed into appointments. What they have now is not a support group. It’s a chat thread that runs all day, men who tell each other when their mental health is slipping, a 200-person retreat in the Poconos every September where grown men throw “I love you” around like it’s nothing. They didn’t get that from the friends who left. They built it. In the full piece this week, I get into the part that surprised me most: the research says the friends who disappeared may have mattered more to these men’s survival than almost anything their doctors did. Not as a feeling. As a measurable predictor of who lives longer and lives better. And what Man Up to Cancer figured out, maybe without naming it, is how to make that support automatic instead of something you have to go beg for at the worst moment of your life. Topics Discussed: * The cave men disappear into after a diagnosis * Why men “check out” when women “reach out” * The friends who vanish, and the science of why that matters * “Man up” reclaimed: courage to ask, not grit to suffer * Michael’s second opinion that overturned “inoperable” * Don’s Lynch syndrome and three separate cancers * What 200 men actually do in the Poconos * Walking to the kitchen counts as being active

Episode 50: Annabelle Gurwitch Has Stage 4. And Better Things to Do.

Two Stages. Same Silence. A few months into her Stage 4 lung cancer treatment, Annabelle Gurwitch’s son came home from college and found her unconscious on the bathroom floor. She’d been on the recommended dose of her targeted therapy. She’d known for weeks it was unlivable. She hadn’t told her doctor. She thought tolerating it was what a good patient did. I knew Annabelle’s book before I knew her story. The End of My Life Is Killing Me: The Unexpected Joys of a Cancer Slacker is the funniest, most honest, and most useful thing I have read about living with an incurable diagnosis. Annabelle has been kicking lung cancer’s ass at Stage 4 for five years, on a targeted therapy she was told would stop working in eighteen months. She is alive because she spoke up. She calls herself a cancer slacker, not a cancer warrior. The phrase is funnier than it is, and more serious than it sounds. What I did not expect, walking into the conversation, was how much of her experience I recognized in mine. I had Stage 2A breast cancer, called my treatment my cancer obliteration project, built a spreadsheet by the second round of chemo to stay ahead of side effects, and still found myself filtering in person. Two different stages. Two different prognoses. Same self-silencing. In the deep-dive for paid subscribers: what the FDA is finally doing about a fifty-year-old assumption in cancer drug dosing, why the rules that determine who gets lung cancer screened are medical sex discrimination, why lung cancer research is funded at a fraction of its mortality burden, and the spreadsheet. It’s free at joellekaufman.com. Topics Discussed * The reframe that replaced “live like you’re dying” * Stamtisch and the German word for Sunday joy * Why “warrior” didn’t fit. “Slacker” did. * The night her son found her on the bathroom floor * Why she’s been at half the recommended dose for five years * Big wellness, the sugar myth, and emergency chocolate * The class action against pharmacy benefit managers * The one piece of advice no one expected 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/]

Episode 49: MDS, AML, Liver Failure. We Ran It Like a Startup.

Heidi Kay Carson's husband Chad was 33, 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, 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/]

Episode 48: 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/]

Episode 47: 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/]