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  • Licensed clinical oncology social worker Ailey Armstrong
    2023/12/18
    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**Ailey Armstrong, MSW, LICSW is a licensed clinical oncology social worker at Fred Hutchinson Cancer Center in Seattle. Today, she shares her insights on transitioning home post-transplant. She emphasizes the importance of continued caregiving support and suggests patients assess their needs in various aspects like medication management, meals, and transportation. Ailey advises making a list of needs and identifying which can be managed independently and which require external support, like arranging rides to medical appointments.Ailey highlights the role of social workers and patient navigators in providing resources and support, including financial assistance and help in returning to work. She also encourages tapping into a broader network beyond the core caregiver team, involving neighbors, church members, and extended family for support.On the emotional side, it's normal to feel a range of emotions from relief to anxiety and fear. The transition brings concerns about managing without the transplant team, handling post-transplant symptoms, and adapting to home life. She addresses the feelings of frustration, anger, and grief that stem from changes in lifestyle and identity post-transplant.To manage these emotions, Ailey recommends acknowledging and processing them rather than avoiding them. She suggests practical strategies like using lists, calendars, and apps to manage medications and appointments. Emphasizing the importance of staying present, she introduces the "dropping anchor" exercise to ground oneself in the present, focusing on immediate sensations and surroundings.Ailey stresses the importance of open communication with medical teams post-discharge, ensuring patients have all necessary contact information. She discusses the normality of mixed emotions upon returning home and the need for time to readjust to family dynamics and home responsibilities.Delving deeper into psychosocial support, Ailey advises discussing mood and sleep changes with medical providers, as these are treatable. She emphasizes the significance of self-compassion and kindness, urging patients to treat themselves as they would a dear friend. Additionally, she suggests having structured daily routines incorporating essential activities and enjoyable tasks to provide a sense of normalcy and control.In conclusion, Ailey underscores that difficult days are inevitable and recommends focusing on wellness. She advises preparing a list of activities and thoughts that induce calmness. Her final message emphasizes self-compassion, encouraging patients to treat themselves with the same kindness and patience they would offer to a loved one.More:Medisafe App for prescription management: https://www.medisafe.com/National Suicide and Crisis Hotline: 988 (three digit phone number)Book: It's OK That You're Not OK, by Megan Devine on Amazon:https://www.amazon.com/Its-OK-That-Youre-Not-OK-audiobook/dp/B075QP5SGH/Book: When Life Hits Hard, by Russ Harris: https://www.amazon.com/When-Life-Hits-Hard-Acceptance/dp/1684039010Book: The Cancer Companion: How to Navigate Your Way from Diagnosis to Treatment and Beyond, by Dr. Toni Lindsay (Parts 2 and 4 in particular): https://www.amazon.com/Cancer-Companion-Navigate-Diagnosis-Treatment/dp/0369366956Other ResourcesNational Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
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    33 分
  • Survivor, Speaker, and Author Gregory Proctor
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    In today's episode of our podcast, we had the privilege of speaking with Gregory Proctor, a 53-year-old multiple myeloma survivor from San Antonio, Texas. Gregory's story is a testament to resilience and hope, as he details his journey through a challenging battle with cancer, starting from his diagnosis in July 2022, to his stem cell transplant, and his ongoing recovery.

    Gregory shares the shock and fear he experienced when first diagnosed, particularly when advised to "get his affairs in order." He describes the mental and emotional toll of dealing with such a diagnosis, emphasizing the importance of mental strength and determination in facing the disease. His story took a dramatic turn with his return to the hospital just 14 hours after being discharged, due to a dangerously high fever. This event marked the beginning of a challenging path to recovery, filled with physical weakness and stringent precautions to protect his compromised immune system.

    A significant part of Gregory's conversation focuses on the emotional challenges of coping with cancer. He talks about the initial period of depression and the process of accepting his new life and journey. This acceptance was crucial in shifting his mindset from despair to determination and finding a renewed sense of purpose.

    Financial toxicity was another critical topic Gregory touches upon. He sheds light on the staggering costs of cancer treatment and the importance of understanding insurance policies and seeking additional resources. His experience highlights the often-overlooked financial burden of battling cancer, which can be as devastating as the disease itself.

    Gregory also discussed the social isolation he experienced, exacerbated by the pandemic and his condition. He highlighted the changes he had to make in his daily routine, like visiting grocery stores during low-peak hours and carefully vetting his social interactions to avoid infections.

    On a positive note, Gregory spoke about regaining his strength and the incremental progress he made in his physical recovery. He emphasized the mental aspect of this journey, pushing boundaries to rebuild his strength gradually. His story is inspiring, showing that persistence and small, consistent efforts can lead to significant improvements over time.

    Gregory's approach to medication management was unconventional yet effective for him. He advocated for a treatment plan that made sense to him and allowed him to maintain some normalcy in his life. This part of the conversation underscored the importance of patient advocacy and being an active participant in one's treatment plan.

    As for his current life, Gregory is channeling his experiences into positive endeavors. He just published his book, titled Faith, Strength, and Courage, and is actively involved in speaking engagements and consultancy work. His story is a beacon of hope for many, illustrating how one can turn adversity into an opportunity to inspire and help others.

    Gregory concluded the podcast with valuable advice for those facing tough days. He stressed the importance of never giving up, finding strength in faith, and realizing that you're not alone in your journey. His message is clear: cancer may be a part of your life, but it doesn't define your entire existence.

    Greg's Book: Faith, Strength, and Courage on Amazon: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X/

    Other Resources

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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    34 分
  • Multiple Myeloma Survivor Diane Raab
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    Today we welcome Diane Raab, a remarkable survivor of multiple myeloma and a licensed clinical social worker from Cheboygan, Michigan. Diane shares her personal journey through the challenging path of cancer treatment, sprinkling her narrative with both professional insights and deeply personal experiences.

    Diane's story begins with the diagnosis of multiple myeloma following persistent back pain. She recounts the rigorous process of diagnosis, which led to seven months of chemotherapy in preparation for a stem cell transplant. She remembers the steroids turned her into an 'Energizer Bunny,' enhancing her productivity during treatment.

    The focus then shifts to her transplant experience at the University of Michigan. Diane praises the comprehensive and detailed guide provided by the hospital, which helped alleviate much of her anxiety. She describes the fascinating process of stem cell harvesting and the convenience of using a port for medical procedures. However, the journey was not without its hardships, as Diane lost her hair due to the intensive chemotherapy, a side effect handled with grace and humor.

    Post-transplant, Diane faced numerous challenges in adjusting to everyday life, from being in a highly protected hospital environment to navigating the risks of infection at home. She had to adopt new hygiene practices, including daily showers with clean towels and washcloths, and careful food preparation to avoid infection risks. Diane also shares the emotional toll of not being able to socialize freely and the adjustments she made to stay connected with friends and family.

    Peggy and Diane delve into the physical changes Diane experienced after her transplant, particularly the fatigue and the need to listen to her body's demands for rest. Diane also touches on the mental aspects of coping with cancer, emphasizing the importance of avoiding negative online forums and focusing on reputable sources for information.

    Diane candidly discusses the challenges of acknowledging her cancer and the psychological impact of the diagnosis. She stresses the importance of therapy and talking about one's experiences, sharing personal anecdotes that highlight the therapeutic value of open communication.

    As the episode concludes, Diane offers invaluable advice for others going through similar experiences. She emphasizes the importance of following medical guidance, staying safe, and finding value in everyday life, relationships, and the simple things. Her story is a testament to resilience, adaptability, and the power of a positive outlook in the face of adversity.

    Other Resources:

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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    32 分
  • Registered Dietitian Sue Hill on Food Safety
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    In the podcast, Peggy welcomes Sue Hill, a registered dietitian at Henry Ford Health Cancer in Detroit, to discuss food safety and nutrition for post-transplant patients. Sue emphasizes the importance of following guidelines by the Academy of Nutrition and Dietetics to prevent foodborne illnesses, as transplant patients have suppressed immune systems. She provides detailed advice on safe food handling, stressing the need to keep hot foods hot and cold foods cold, and the importance of storing foods at correct temperatures to prevent bacterial growth.

    Sue advises on meat handling, recommending thawing meat in the refrigerator and cooking it thoroughly, especially for transplant patients. She underscores the necessity of properly handling and cooking eggs, as well as ensuring fresh fruits and vegetables are cleaned correctly. A specific tip is to use a vinegar-water solution for cleaning produce. For post-transplant patients, Sue suggests avoiding pre-cut fruits and vegetables from stores and opting for whole, washable, and peelable items instead.

    The conversation also covers the handling of cooked meals by friends or family, where Sue recommends preparing food in the patient’s kitchen when possible to ensure safe food practices. She also discusses the importance of maintaining proper food temperatures during transportation and reheating.

    Regarding vitamins, minerals, and probiotics, Sue advises consulting with healthcare teams before adding supplements, as they monitor patients for specific needs. She highlights the value of natural food sources like Greek yogurt for probiotics.

    Sue also touches on hydration, suggesting safe water sources and recommending products like Pedialyte for electrolytes. For sugar intake, she clarifies misconceptions, advocating for healthier carbohydrate choices and warning against simple sugars. Additionally, Sue advises against alcohol consumption post-transplant due to its impact on the liver, which is already burdened by medications and chemotherapy.

    Lastly, Sue offers tips for managing low appetite and fatigue days, suggesting simple, familiar foods and staying hydrated. She encourages patients to inform their healthcare team if sluggishness persists. Sue concludes with a positive note on the progress in post-transplant patient care and outcomes.

    FDA Safe Food Handling Guidelines: https://www.fda.gov/food/buy-store-serve-safe-food/safe-food-handling

    Bananatrol Plus Prebiotic:https://www.trybanatrol.com/

    Other Resources:

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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    29 分
  • Survivor Turned Advocate Alan Katz
    2023/12/18
    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**In today's episode, we had the privilege of speaking with Alan Katz, a Massachusetts resident and a survivor of Acute Myeloid Leukemia (AML). Alan's journey through his diagnosis, treatment, and life post-transplant is both inspiring and enlightening. He shares his experience of battling the disease with a robust support system, offering hope and encouragement to those facing similar challenges.Alan's story began with unusual health symptoms that surfaced in 2019, eventually leading to an unexpected AML diagnosis in November 2020. He recounts the various medical anomalies he encountered, including mono, vitreous detachment, back issues, and a case of poison ivy, which collectively hinted at underlying health problems. This series of events culminated in an orthopedic visit, where an MRI revealed abnormalities in his bone marrow, prompting urgent cancer treatment.The swift pace of his diagnosis and treatment left little time for Alan to process the situation. He underwent a bone marrow transplant after finding a match through The Gift of Life, a bone marrow registry associated with Be The Match. This organization played a pivotal role in his journey, especially given the unique challenges faced by individuals of Ashkenazic Jewish descent in finding compatible donors. Since then, more Jewish individuals are on the registry, but Alan is working to improve the numbers for currently underserved communities.Alan's transplant, a significant milestone in his recovery, was celebrated as his "re-birthday". However, his battle didn't end there. He faced a relapse 97 days post-transplant, which required further intensive treatment, including chemotherapy and a donor lymphocyte infusion. This challenging period underscored the critical role of a strong support system. Alan emphasizes the importance of support from family and friends, particularly highlighting the unwavering care provided by his wife, who became his primary caregiver.Throughout the podcast, Alan discusses the physical and mental toll of AML treatment and recovery. He speaks candidly about the daily struggles, from dealing with fatigue and following a strict medication regimen to the mental grind of enduring a long recovery process. He shares practical advice and coping mechanisms, such as living one day at a time and never giving up, which helped him navigate the journey.Volunteering and advocacy became integral parts of Alan's life post-recovery. He engages in various activities, including mentoring AML patients, organizing fundraising events, and promoting the importance of diverse bone marrow registries. His efforts aim to inspire, educate, and support others facing similar battles.Alan's story is not just about surviving a life-threatening illness but also about the transformative power of human resilience, community support, and the importance of giving back. His journey from diagnosis to recovery and advocacy offers valuable insights and hope to those affected by AML and other challenging health conditions.Gift of Life Bone Marrow Registry: https://www.giftoflife.org/Be the Match Website: https://bethematch.org/Book: Between Two Kingdoms: A Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Memoir-Interrupted/dp/B08BTMJ2RGOther Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
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    31 分
  • Caregiver Leila Zengel Shares Her Family's Experience
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    In this podcast, Peggy converses with Leila Zengel, who shares her family's journey and challenges following her 10 year-old daughter Julie's bone marrow transplant. Julie, diagnosed with (refractory) Ph-like ALL in January 2018, underwent a transplant in June 2018 at the Children's Hospital of Philadelphia (CHOP) with her brother Jacob as her donor. Leila, a former school counselor and educator, delves into the complexities of transitioning to a full-time caregiver role for her daughter.

    The conversation begins with Julie's diagnosis and the subsequent need for a transplant, highlighting the difficulties in finding effective treatment. Leila describes her shift from a professional career to focusing entirely on Julie's care, emphasizing the drastic change in their family life. The process was challenging, as Julie did not respond well to initial treatments, leading to the critical decision for a transplant.

    Leila shares the emotional and logistical challenges faced during the post-transplant phase, particularly the adjustments required when returning home. Living two hours away from the hospital posed additional difficulties. She speaks about the nuances of balancing care for Julie while managing the rest of the family, including her son Jacob. Leila's story is a deep dive into the realities of caregiving, from handling the medical complexities to the emotional toll on the family.

    Leila talks about the importance of self-care for caregivers. Leila stresses the need for moments of rest and relaxation amidst the demanding role of caring for a child with a serious medical condition. She talks about the value of simple activities like puzzles and reading, which provided her with much-needed respite.

    Leila also discusses the unexpected medical challenges that emerged post-transplant, such as chronic graft-versus-host disease. Despite these hurdles, Julie's gradual recovery is a testament to the resilience of both the child and the family. Leila highlights Julie's return to normal activities, including participating in the school band, as milestones in her recovery.

    Family dynamics and adapting to a new normal at home are central themes. Leila explains how they navigated through changes, setting boundaries to protect Julie's health and creating new family traditions. She emphasizes the importance of living in the present and finding joy in small moments, reflecting on the perspective gained through this challenging journey.

    Lastly, the role of support systems, particularly the medical team and communities like Momcology, is discussed. Leila underscores the value of these networks in providing support and understanding to families undergoing similar experiences. The podcast ends with Leila offering insights and advice for other caregivers, highlighting the importance of community, self-care, and focusing on the present.

    Momcology Website: https://momcology.org/

    Other Resources

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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    32 分
  • Season 12 Trailer
    2023/12/08

    Welcome to Season 12 of the Marrow Masters Podcast, brought to you by the National Bone Marrow Transplant Link, and sponsored by Sanofi. This season focuses on one critical question. "I'm home. Now what?" You'll hear candid stories and advice from survivors and caregivers. This season, you'll also get valuable advice from a registered dietician and a social worker. Season 12 of the Marrow Masters Podcast is out December 19th, 2023. Don't miss an episode - follow our show for free on Apple, Spotify, YouTube, or at www.nbmtlink.org

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    3 分
  • Loriana Hernandez Armors Up For Life
    2023/08/31

    Loriana Hernandez felt like she had it all. She'd been a news anchor all over the country whose profile had risen nationally. In her own words, she was a clean-eating, green-drinking, yoga enthusiast. She had a two-year-old son, and was in the midst of fertility treatment when her doctor noticed there was something wrong.

    Loriana had AML Leukemia, and a doctor contact at world-renowned Johns Hopkins told her "Get on a plane. Say goodbye to your son. You don't have time to waste. We have a bed waiting for you." She had reported on these stories for years. Now Loriana was the story. In fact, she still deals with the PTSD from her son calling after her down the jetway - a son who wouldn't recognize her after she'd been away for months of treatment.

    At Johns Hopkins, reality set in. Because of her Cuban heritage, and lack of people of color on bone marrow registries, she was given a 25% chance of survival. She was told to put her armor on, and she believes that her healthy lifestyle indeed helped her "armor up" for her battle, which included high-intensity chemotherapy. At one point, she was sent home. Doctors believed this might be her last chance to see her son.

    Loriana did receive a bone marrow transplant from her sister, and was able to see her son before Christmas. Throughout her treatment and after she was sent home to recover, she did was she was professionally trained to do as a storyteller. Loriana reported. She reported on all the trials and tribulations of the process, including the psychological challenges we don't often hear about. This would later include developing breast cancer because of her chemotherapy, which she also survived. This time she was able to be with her son during treatment, which she saw as a win.

    Loriana founded Armor Up For Life, a non-profit that helps people, particularly those in underserved communities, get healthy and prepare for the fight if they do indeed find themselves in a battle like she did. They've coined the term "PRE-hab."

    Armor Up For Life Website: https://armorupforlife.org/

    Instagram: https://www.instagram.com/armorupforlife/

    Facebook: https://www.facebook.com/armorupforlife/

    Look for her podcast, "Stage Free," coming soon.

    Other Resources

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.

    https://www.sanofi.com/

    https://www.lls.org/patient-support

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    35 分