Podcast Summary

This Is Woman’s Work with Nicole Kalil & Airwave Media

Episode 391: Survival Is Woman’s Work with Kathy Giusti
Release Date: March 2, 2026

Episode Overview

In this episode, host Nicole Kalil sits down with Kathy Giusti, a two-time cancer survivor, founder of the Multiple Myeloma Research Foundation (MMRF), and author of "Fatal to Fearless." Together, they examine the raw reality of survival, far beyond the sanitized version often shared or celebrated—delving into what survival looks and feels like in real time, especially as a woman and a mother. Kathy shares her experience navigating life-threatening illness, becoming a pioneering patient advocate, and learning the delicate, ongoing balance of saving your life while living it.

Key Discussion Points & Insights

The Unexpected Start: Diagnosis and Upending of Life

• Kathy’s Diagnosis Story (03:58)
  • At age 37, Kathy was at the "peak of her career, happily married, just bought a new home, thinking, ‘we're actually getting this right’."
  • The diagnosis of multiple myeloma arrived suddenly, altering every life plan instantly:

    "I remember…taking that Christmas tree down and I'm thinking, I may never open this box again. Like, I could be dead by next Christmas." (Kathy, 04:27)

  • Emphasized the shock: “They all say it like your life can change in a second. And it can. It really can.” (Kathy, 04:41)
  • Survival vs. Ambition: "Everything else goes away but your family." (Kathy, 05:39)

The Daily Reality of Survival

• Getting Through Each Day (06:21)

  • "How do you put your feet on the floor in the morning? …The joy of having an 18-month-old was, though…The smile on her face and the smile on mine…takes you to a new level of I need to be up, I need to be doing life with her right now." (Kathy, 06:30)
  • Shift from wistful inspiration to urgent presence and memory-making.

• Holding Onto Hope

  • Encouraged survivors to "find that one thing you can hold onto."
  • For Kathy, it was her unique position as an identical twin and the emerging possibility of a stem cell transplant.
  • "It happened over time… the more research I started doing... I was different and thought, well, maybe I'll hang on to that." (Kathy, 07:47)
  • Acknowledged privilege: Supported by a compassionate employer during illness.

Language of Survival: Fight vs. Marathon

• Reframing “Fight” in Illness (09:40)
  • Debated language like "beat" or "fight":

    "For many cancer patients today, it’s a longer battle and it feels much more like a marathon… That’s a good thing." (Kathy, 10:23)

  • Early stages feel overwhelming and combative:

    "When you’re diagnosed…you’re drinking water from a fire hose…It feels like a fight because the system is not organized in a way that makes it easy for you." (Kathy, 10:51)

  • Later, as treatment stabilizes, “it starts to feel a bit more like a marathon…you're still worried about relapse.” (Kathy, 11:33)

Navigating the Healthcare System

• Role of Women as Healthcare CEOs (12:36)

  • "As women, we are the CEOs of healthcare for ourselves and our families."
  • Discussed responsibilities: "A lot of us are not healthy and/or we're taking care of spouses, children, parents that are sick too."
  • Practical advice for working with today’s tools:
    • Master the patient portal: "Put things in writing, they're going to respond to you. Your portal is a very important tool for you." (Kathy, 13:13)
    • Get precise about diagnoses—pull definitions from official sources.
    • Use Google/AI carefully: Ask for "peer reviewed journals" and “current” information.
    • Find and vet disease-specific foundations and groups.
    • Distinguish “educators” from “influencers” on social media:

      "You want to really look at their credentials… you'll know if they’re good because they’re often in the peer reviewed journals." (Kathy, 15:14)

  • Cautions about getting lost in anecdote or unverified advice online.

• Advocating for Yourself (20:44 – 21:19)

  • "Women’s intuition is a wonderful thing…for some reason we feel intimidated when we go in and want to change our doctors…"
  • Reminder: "We care more about finding our own cures than anybody else does…It’s on you to know all that."
  • Urges women to seek second opinions, especially from specialists:

    “…from somebody who lives and breathes in your illness…from a major academic center who’s doing some of the cutting edge research." (Kathy, 22:59)

Boundaries, Burnout, and Family

• Lessons from Thirty Years of Journals (23:34)
  • Kathy began journaling for her daughter, initially to create memories in case she died.
  • Over time, journals reflected her own needs, wishes, and regrets.
  • Key realization: "You are so busy saving your life when you have a fatal disease that sometimes you forget to live your life." (Kathy, 25:38)
  • No boundaries:

    "If there’s one piece of advice I would give to everybody…you have to have some boundaries."

  • Personal examples: Despite career impacts and illness, she’d take on too much, never asking for events/meetings to be spaced out.
  • Regret: Not being as present for family, especially her daughter in her teenage years. She apologized to her family for this in her book.
  • "Cancer does not trump all, disease does not trump all. And caregivers and those that love you can get tired too. And you’ve got to check in with them and make sure that they’re doing okay as well. It’s not just about you." (Kathy, 29:42)

Survival Today: Science and Hope

• Hope in Advancing Science (30:56)
  • "The science is moving so fast…there is so much reason to hope, because science going on today is going to move forward."
  • Encouraged listeners: Even if survival feels like a burden, balancing saving your life with living your life is critical.
  • "You have to ask for help and find the resources…to ease the pain a bit there, and take that time to go spend it with your family."
  • Recognized it’s never easy: “The medical system can take over every ounce of energy that you have.”

Notable Quotes & Memorable Moments

• On the Myth of Resilience:
  "Resilience isn’t pretty. It’s not linear. We hear about strength, courage, and clarity, but not about the endurance…the decisions you need to make while you’re exhausted and afraid."
  – Nicole Khalil (01:13)

• On Being Diagnosed:
  "I may never open this box again. Like, I could be dead by next Christmas."
  – Kathy Giusti (04:27)

• On “Fighting” Cancer:
  "…when you’re diagnosed…you’re drinking water from a fire hose, you’re overwhelmed. And it does feel like a fight…because the system is not organized in a way that makes it easy for you."
  – Kathy Giusti (10:51)

• On Boundaries:
  "If there’s one piece of advice I would give to everybody…you have to have some boundaries."
  – Kathy Giusti (26:39)

• On the Impact of Disease on Family:
  "Cancer does not trump all, disease does not trump all. And caregivers and those that love you can get tired too. And you’ve got to check in with them and make sure that they’re doing okay as well. It’s not just about you."
  – Kathy Giusti (29:42)

• Encouragement for Those in Survival:
  "Survival doesn’t mean being brave all of the time. It doesn’t have to be inspiring...You don’t need to do any of this perfectly. Nobody ever has. You don’t need to do it alone. Nobody ever should."
  – Nicole Khalil (33:45)

Important Timestamps

• 03:58 – Kathy’s diagnosis story and immediate impact on her life
• 06:21 – Navigating daily survival, hope, and doing life “for now”
• 09:40 – Language of cancer: “fight” vs. “marathon”
• 12:36 – Becoming CEO of your own healthcare and vetting online resources
• 20:44 – How to advocate for yourself, trust your intuition, and seek second opinions
• 23:34 – Life lessons and regrets from journaling through illness
• 30:56 – Advice for those currently in survival mode; balancing life, hope, and science
• 33:45 – Episode wrap-up, final encouragement from Nicole

Takeaways

• Survival is messier, grittier, and more individual than the packaged stories we often hear.
• Setting boundaries and remembering the needs of those who care for us is vital, even—especially—when we’re fighting for our lives.
• Being an advocate and an informed patient is crucial, and women often bear this load for their families.
• The progress of medical science gives real hope, but it still demands personal agency and tenacity.
• “Woman’s work” includes the labor of surviving, enduring, and choosing to live meaningfully—whatever that looks like for you.

Resource Links:

• Kathy Giusti’s book: "Fatal to Fearless"
• Follow Kathy: Instagram: @kathygi