In today's episode, we have the pleasure of speaking with Janet Young from Massachusetts, who shares her challenging yet inspiring journey with acute myeloid leukemia (AML) and her subsequent stem cell transplant. Diagnosed in March 2022, Janet underwent a transplant in August of the same year after a regimen of intensive chemotherapy. Remarkably, her transplant occurs on her ACTUAL birthday, adding a poignant touch to her recovery story.

Janet discusses the profound fatigue she experiences post-transplant, describing it as an overwhelming tiredness that significantly limited her daily activities initially. However, over 21 months, she's progressed from barely being able to walk to her driveway to completing a two-and-a-half-mile walk, a significant achievement in her recovery.

Another major challenge Janet faces is the loss of muscle strength, for which she has been in physical therapy, greatly improving her stamina. Cognitive issues, particularly with memory and word recall, are also significant hurdles that Janet continues to navigate. These symptoms are common among transplant recipients and will slowly improve.

Janet also touches on Graft Versus Host Disease (GVHD), a complication of her transplant manifesting mainly in her lower limbs. Treatment for GVHD includes starting a medication called Rezurock, which she hopes will be effective.

Her social interactions have changed, too. She spent a year isolated post-transplant, which has altered her casual relationships although her closer friendships remain strong. Janet also mentions adapting her life to manage her energy better, using the "spoon theory" to prioritize activities based on her daily energy levels.

Concluding the interview, Janet shares how she has had to modify her approach to planning and socializing, focusing on self-care and adjusting to a new normal. She remains thankful for every new day and emphasizes the importance of support groups in her ongoing recovery.

This powerful story not only highlights the physical and emotional challenges of dealing with AML and undergoing a stem cell transplant but also showcases the resilience and gradual return to normalcy despite the challenges of GVHD. Janet's journey is a testament to the power of medical treatment, personal determination, and community support in navigating life after a major health crisis.

Resources:

Dana Farber Cancer Institute https://www.dana-farber.org/

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/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

In this episode, Peggy interviews Beth Ades, who shares her compelling journey after being diagnosed with Myelodysplastic Syndrome (MDS) in 2021. Beth's story begins with mysterious bruises on her legs, leading to a diagnosis that required immediate hospitalization and numerous tests. Despite a harrowing seven-month diagnostic process, Beth was eventually diagnosed with MDS and was told her only chance of survival was a bone marrow transplant.

Beth recounts the emotional and physical challenges she faced, including a life-saving transplant from a 19-year-old donor in Germany. The connection between Beth and her donor has evolved into a meaningful relationship, showcasing the profound impact of such donations. Despite the difficulties, Beth's experience has been transformative, igniting a passion in her donor to pursue medicine and advocate for bone marrow registries.

Post-transplant, Beth faced severe side effects such as mucositis, which she describes as far more than just mouth sores, but a condition affecting her entire gastrointestinal tract. Her proactive approach and close communication with her medical team were crucial in managing these issues. This acute GVHD passed, but she still deals with chronic GVHD in her eyes.

Beth also shares the wisdom imparted by her social worker about the challenging transition back to everyday life. The first hundred days post-transplant were particularly tough as she felt isolated from her family's ongoing life. However, the experience has given her a new perspective, emphasizing the importance of acknowledging and dealing with these emotional hurdles.

The interview highlights the concept of paying it forward, which Beth embraced through organizing blood drives and bone marrow registry events. Her husband also became involved by signing up as a courier for the National Marrow Donor Program, (NMDP) reflecting their deep commitment to giving back. There is also a tribute race car in the works, yet another way this family is raising awareness on and off the track.

Beth's story underscores the collective effort required in the transplant journey, from medical professionals to supportive family and community members. Her reflections on gratitude, finding humor in difficult times, and the importance of small comforts, like warm blankets, offer valuable insights for others navigating similar experiences.

Beth concludes with an inspiring note on the transformative power of her journey. She appreciates the profound changes it has brought to her life, stating she would choose her transplant life over her previous one despite the hardships. Her resilience and positivity are palpable, leaving listeners with a sense of hope and the importance of community support in overcoming life's toughest challenges.

Resources:

Beth's Bone Marrow Journey Facebook Page: https://www.facebook.com/profile.php?id=100077793195673

NMDP (formerly Be The Match): https://bethematch.org/

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/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

In this episode we interview Heather Knutson, a registered dietitian from the Leukemia & Lymphoma Society (LLS). Heather shares invaluable advice on nutrition management post-transplant, emphasizing the critical role of caregivers in the dietary adjustments necessary during this period.

We start by addressing the challenges that both survivors and caregivers face when transitioning back home. Heather points out the importance of preparation before the survivor arrives home, suggesting that caregivers can ease the process by shopping in advance and preparing meals that can be easily accessed and consumed. She stresses the utility of having ready-to-eat and easy-to-prepare meals and snacks available to accommodate the fatigue that is common in survivors.

A significant portion of the discussion revolves around the evolving dynamics between caregivers and survivors. Heather advises on strategies to mitigate stress and potential strain on relationships, suggesting practical tools like setting reminders for meals and medications, and using apps like the LLS Health Manager to coordinate care and dietary tracking.

Heather also dives into the specific nutritional needs of survivors, highlighting the increased protein requirements post-transplant and the importance of balanced, nutritious meals to aid in survivorship. She provides tips for ensuring safety in food preparation and handling, particularly for survivors with compromised immune systems.

The conversation further explores the emotional and logistical support that can be provided by friends and family, such as organizing meal trains or offering help with household chores, to lessen the burden on caregivers.

As we wrap up, Heather touches on the broader FREE services provided by LLS, including one-on-one nutrition consultations and meal planning support, aimed at managing side effects and improving the quality of life for survivors and their families.

This episode offers a comprehensive look at the intersection of caregiving, nutrition, and survivorship in the context of post-transplant recovery, providing actionable advice and emphasizing the power of thoughtful, well-coordinated care.

Resources:

LLS Phone Number: 877-467-1936

LLS Website: https://www.lls.org/

LLS Nutrition Website: llsnutrition.org

LLS Health Manager App: https://www.lls.org/article/lls-health-manager-app-available-now

Fairlife Product Website: https://fairlife.com/

Survivor Gregory Proctor's book Faith, Strength, and Courage: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X

Food Safety Podcast Episode with Sue Hill: https://marrowmasters.simplecast.com/episodes/sue-hill

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/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

In this episode, we talk with Rachael Sommer, a dedicated mother and caregiver from Cleveland, Ohio. Rachael shares the journey of her daughter Maddie, who was diagnosed with Hepatosplenic T-cell Lymphoma in October 2023, after several months of mysterious symptoms. Treated at Nationwide Children's Hospital in Columbus, Maddie's condition has profoundly impacted their lives.

Rachael recounts their initial stay at the Ronald McDonald House post-diagnosis, highlighting the physical and emotional changes Maddie experienced. Maddie's extreme fatigue and breathlessness were particularly challenging, and Rachael emphasizes the importance of adjusting to a "new normal" while staying in constant communication with doctors. Rachael found solace in the Ronald McDonald House's facilities, specifically the fitness room, which helped her manage her own stress.

The conversation shifts to the emotional toll on Maddie, who struggled with isolation from friends and the mental burden of not being able to participate in normal activities. Despite the support of friends and thoughtful gestures like sending cards, nothing could replace the physical presence of her peers. Rachael's creativity shone through when she set up a Google camera to allow Maddie to see her cats, Binks and Leon, while they were away.

Rachael discusses the importance of recognizing and respecting individual emotional needs. Maddie’s withdrawal from activities she once enjoyed, like listening to music, was particularly hard for Rachael, who feared losing her daughter's spirited personality. Eventually, Maddie slowly began to regain her sarcasm and interactions with her younger brother, Ezekiel, signaling a return to her usual self.

The financial strain of Maddie's illness is another significant aspect of their journey. Rachael praises the support from various organizations, including Carrie's Cause, Fight Like A Dozer, and the Leukemia & Lymphoma Society, which provided crucial financial aid. This support allowed Rachael to focus on Maddie's care without the added burden of financial stress.

Rachael also shares her career transition to consulting, driven by the need for greater flexibility to support her family. Her faith in God has been a cornerstone throughout this journey, providing spiritual strength and community support.

Finally, Rachael reflects on the importance of savoring small moments of joy amidst the challenges. She encourages other caregivers to focus on what truly matters, finding moments of normalcy and joy, and maintaining hope and strength for their loved ones.

Resources:

Nationwide Children's Hospital, Columbus, Ohio: https://www.nationwidechildrens.org/

Fight Like a Dozer: https://www.fightlikeadozer.org/

Leukemia & Lymphoma Society (LLS): https://lls.org/

NMDP (formerly Be The Match): https://bethematch.org/

The Bible Recap: https://www.thebiblerecap.com/

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/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Our 13th season of the Marrow Masters podcast, produced by the National Bone Marrow Transplant Link, is out June 1, 2024. This season will focus on side effects of bone marrow and stem cell transplant, including GVHD. As always, you'll hear expert advice from professionals.

You'll hear from patients who are open and honest about their experiences.

Caregivers are also a key part of the journey, who also must take care of themselves physically, mentally, and for some, spiritually.

The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Sanofi. Look for all six episodes June 1 on Apple, Spotify, YouTube or wherever you're listening right now. And for more, visit the National Bone Marrow Transplant Link, nbmtlink.org or follow the link below.

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/