<![CDATA[Josie]]>https://cancersurvivormd.substack.comhttps://substackcdn.com/image/fetch/$s_!354P!,w_256,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F1b46a368-230a-4580-a8a0-3a4f8938c9d4_1280x1280.pngJosiehttps://cancersurvivormd.substack.comSubstackSat, 18 Jul 2026 10:22:25 GMT<![CDATA[Why I'm Here]]>https://cancersurvivormd.substack.com/p/why-im-herehttps://cancersurvivormd.substack.com/p/why-im-hereWed, 15 Jul 2026 21:57:39 GMT

Thanks for reading! Subscribe for free to receive new posts and support my work.

Welcome.

I’m so glad you found your way here.

For nearly three decades, I was a physician. As a medical oncologist and geriatrician, I had the privilege of walking alongside patients through some of the most challenging moments of their lives. I believed deeply in science, careful listening, and the extraordinary resilience of the human spirit.

I never imagined that one day I would become the patient.

Over the years, I have experienced medicine from both sides of the stethoscope. I am a cancer survivor. I live with a rare, progressive mitochondrial disease. Like so many people living with rare diseases, I spent years searching for answers before finally receiving a diagnosis. That diagnosis ended my medical career, but it also began a very different journey—one that has taught me as much about medicine, humanity, resilience, and hope as my years in practice ever did.

This Substack is where those two worlds meet.

It isn’t simply about mitochondrial disease.

It isn’t simply about cancer.

It isn’t simply about medicine.

It is about what illness teaches us.

It is about the long road to a diagnosis, the relief of finally having answers, and the challenge of rebuilding a life that no longer resembles the one we had planned.

It is about navigating disability while preserving dignity.

It is about grief, identity, purpose, and hope.

It is about discovering that sometimes the greatest gift medicine can offer isn’t a cure—it is being heard, being believed, and finally having an answer.

Above all, it’s a story about what it means to care, to be cared for, and to find meaning on both sides of medicine.

Some weeks I’ll share stories from my own journey—from physician to patient—moments that changed how I see medicine, my patients, and myself.

Other weeks I’ll write about what I wish every healthcare professional understood about living with chronic illness, rare disease, cancer survivorship, disability, and diagnostic uncertainty.

I’ll also explore research, advocacy, resilience, caregiving, ethics, and the quiet lessons that illness teaches us about being human.

I don’t pretend to have all the answers.

What I do have are stories.

Stories of loss.

Stories of hope.

Stories of medicine.

Stories of unexpected joy.

Stories of the remarkable people I’ve met—both as a physician and as a patient.

If you are living with a chronic illness, caring for someone who is, working in healthcare, or simply trying to make sense of life’s unexpected turns, I hope you’ll find something here that resonates.

You don’t need to have my diagnosis to recognize yourself in these stories.

My hope is that this becomes a place where patients feel believed, caregivers feel understood, healthcare professionals gain a different perspective, and all of us are reminded that every diagnosis belongs to a person before it belongs to a disease.

Whether you arrive here because of rare disease, cancer, medicine, caregiving, or simply because life has taken an unexpected turn, I hope you’ll discover that these stories are ultimately about something we all share: being human.

If these stories speak to you, I’d be honored if you subscribed and joined me on this journey.

Thank you for being here.

Before you go…

I’d love to get to know you.

Please introduce yourself in the comments. I’d love to know your story and what you hope to find here.

BIG HUG,

Josie

Thanks for reading! Subscribe for free to receive new posts and support my work.

]]><![CDATA[How Could Anyone Be Happy to Hear They Had a Terminal Illness?]]>https://cancersurvivormd.substack.com/p/how-could-anyone-be-happy-to-hearhttps://cancersurvivormd.substack.com/p/how-could-anyone-be-happy-to-hearSat, 11 Jul 2026 20:10:45 GMT

It sounds impossible.

How could anyone feel relief after hearing they had a terminal illness?

I did.

Not because I wanted to be sick.

Not because I wanted my future rewritten.

I was relieved because, after years of searching, someone finally explained what had been happening to me.

⸻

The phone call lasted less than a minute, yet it divided my life into a “before” and an “after.”

Three months earlier, I had met with a pediatric geneticist whose life’s work had been devoted to helping patients with rare genetic and genomic disorders, including metabolic and mitochondrial diseases. After carefully listening to my story and examining me, he told me that, for the first time, all of my symptoms could be explained by a single diagnosis: a primary mitochondrial disease. The genetic testing would tell us which one.

Those three months were filled with uncertainty.

I had already begun grieving the possibility that my life was about to change forever. At the same time, I still hoped I might recover enough to return to the profession I loved.

One of the manifestations of my illness was progressive weakness of the muscles involved in breathing and producing my voice. As my respiratory muscles weakened, I could no longer generate enough breath support to speak for long periods, and my voice gradually faded. As a medical oncologist and geriatrician, my voice was one of my most important clinical tools. When it failed, so did my ability to care for my patients.

I used every one of my four weeks of vacation, convinced that rest would restore the physician I had always been.

It didn’t.

As the end of my leave approached, I found myself caught between hope and reality. I still hoped I would recover enough to return to work, but my body was telling me otherwise. I knew I wasn’t well enough to care for my patients, yet without a definitive diagnosis I feared I would be expected to return. I also worried that I might not qualify for long-term disability benefits without objective proof of what my body already knew.

So I called my geneticist with one simple question.

“Can I go back to work?”

There was a long pause.

I could hear him swallow.

Then he said quietly,

“Josie, I got your genetic results back yesterday.”

Time stopped.

Everything around me disappeared, as though I had been placed inside a vacuum. I could still hear his voice, but nothing else seemed to exist.

“It confirms you have POLG.”

Another pause.

“You won’t be able to go back to work.”

Then, almost immediately, my mind sprang into motion.

The physician in me took over.

POLG.

What do we know?

Who are the experts?

Is there any treatment?

What should I read?

What do I do next?

At the very same time, another realization settled over me.

I had just cared for my last patient.

Without ever knowing it.

My career—the work that had given my life purpose for decades—had ended.

I would never have the opportunity to return to my clinic, thank my colleagues, or say goodbye to the patients who had entrusted me with some of the most difficult moments of their lives.

That realization broke my heart.

Beside me, my husband sat in stunned disbelief, trying to absorb the future that had just unfolded before us.

And yet, beneath the grief, another emotion quietly emerged.

Relief.

⸻

That reaction surprises people.

How could the diagnosis of a progressive, life-limiting disease bring relief?

Because for years my body had been trying to tell me something was terribly wrong.

I was becoming weaker.

Walking required more effort.

Fatigue seeped into every corner of my life.

My breathing became difficult.

My voice faded.

My eyes no longer worked together.

One symptom after another appeared, yet no one could explain why they all belonged together.

As a physician, I trusted science.

I also trusted my own observations.

Yet as test after test failed to provide an explanation, uncertainty slowly took its toll.

When medicine doesn’t yet have an answer, people naturally begin searching for other explanations.

Perhaps it was stress.

Perhaps I had worked too hard.

Perhaps I simply needed more rest.

After hearing enough variations of those ideas, I began asking the same questions of myself.

Perhaps I simply wasn’t trying hard enough.

Perhaps everyone else was able to push through fatigue because they were stronger than I was.

Perhaps if I exercised more, rested differently, slept better, or simply had more determination, I could become the physician I used to be.

Without a diagnosis, it’s remarkably easy to mistake disease for personal failure.

Maybe they’re right.

Maybe this is somehow my fault.

Maybe I’m imagining more than is really there.

Looking back, I think one of the greatest burdens of an undiagnosed illness is not simply the physical suffering.

It is the gradual loss of confidence in your own experience.

⸻

The phone call changed that.

The genetic result didn’t change what was happening to my body.

It changed what I knew about it.

It finally gave my illness a name.

It explained why my muscles were failing.

Why my breathing had changed.

Why I had lost my voice.

Why I could no longer do the work I loved.

It transformed uncertainty into certainty.

As devastating as that certainty was, it also allowed me to stop fighting reality.

I wasn’t weak.

I wasn’t lazy.

I wasn’t burned out.

I wasn’t imagining any of it.

My body had been telling the truth all along.

⸻

People often think that hope disappears after a terminal diagnosis.

That wasn’t my experience.

Hope simply changed.

I stopped hoping someone would tell me nothing was wrong.

Instead, I hoped for more time with my husband, my son, my family, and my friends.

I hoped for research.

I hoped for treatments.

I hoped that by sharing my story, someone else who has spent years searching for answers might recognize themselves in it and know they are not alone.

⸻

As physicians, we often think the greatest gift we can give our patients is treatment.

My illness taught me there is another gift that can be just as important.

A diagnosis.

A name.

An explanation.

Validation.

A diagnosis cannot always offer a cure.

Sometimes it offers something different.

It gives a patient permission to stop doubting themselves.

It allows them to stop searching and begin adapting.

It replaces uncertainty with truth.

That phone call didn’t save my life.

In many ways, it gave me my life back.

And that is why I felt relief when, at long last, I finally had an answer.

Thank you for being here.

Before you go…

Have you ever had a moment when finally having an answer—even a difficult one—brought you relief?

I’d love to hear your story in the comments.

BIG HUG,

Josie

]]><![CDATA[Author Chat with Carolyn Roy-Bornstein]]>https://cancersurvivormd.substack.com/p/author-chat-with-carolyn-roy-bornsteinhttps://cancersurvivormd.substack.com/p/author-chat-with-carolyn-roy-bornsteinWed, 13 May 2026 16:08:13 GMTIn this Author Chat, Josie van Londen and Brad Buchanan speak with pediatrician and writer Carolyn Roy-Bornstein about her new book, A Prescription for Burnout: Restorative Writing for Healthcare Professionals. Carolyn explores burnout not as a personal failure, but as a signal of disconnection from meaning, purpose, and the soul of medicine. Together they discuss how writing can help clinicians process grief, anger, moral injury, compassion fatigue, uncertainty, and the emotional weight of bearing witness to suffering. The conversation also explores reflective writing as a tool for self-awareness, restoration, openness, and reconnection with the sacred moments that still exist in healthcare.

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]]><![CDATA[Author Chat with Carolyn Roy-Bornstein]]>https://cancersurvivormd.substack.com/p/author-chat-with-carolyn-roy-bornstein-816https://cancersurvivormd.substack.com/p/author-chat-with-carolyn-roy-bornstein-816Fri, 08 May 2026 13:00:00 GMTIn this Author Chat, Josie van Londen and Brad Buchanan speak with pediatrician and writer Carolyn Roy-Bornstein about her new book, A Prescription for Burnout: Restorative Writing for Healthcare Professionals. Carolyn explores burnout not as a personal failure, but as a signal of disconnection from meaning, purpose, and the soul of medicine. Together they discuss how writing can help clinicians process grief, anger, moral injury, compassion fatigue, uncertainty, and the emotional weight of bearing witness to suffering. The conversation also explores reflective writing as a tool for self-awareness, restoration, openness, and reconnection with the sacred moments that still exist in healthcare.

Links relevant to this episode:

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]]><![CDATA[Essential Elements of Cancersurvivorship Care: Care Coordination]]>https://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-ff5https://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-ff5Wed, 15 Apr 2026 14:00:00 GMTIn this final episode of The Essential Elements of Cancer Survivorship Care, we explore care coordination—the complex, often overwhelming task of managing life after cancer. From juggling medical appointments, work, family, and personal healing, to navigating uncertainty and shifting priorities, survivorship can feel like a full-time job.

Dr. Josie van Londen, along with social worker Colleen Dwyer and survivor Brad Buchanan, share practical insights and deeply personal experiences. They discuss the importance of self-compassion, speaking up when overwhelmed, and leaning on both healthcare teams and loved ones for support. Brad’s powerful story highlights the real-world challenges of coordinating care across multiple specialists, navigating conflicting medical decisions, and accessing life-saving treatments.

This episode offers validation, guidance, and encouragement to help you find your own path through the complexities of survivorship—reminding you that you don’t have to do it alone.

Links relevant to this episode:

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]]><![CDATA[Essential Elements of Cancersurvivorship Care: Symptoms]]>https://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-5bbhttps://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-5bbMon, 16 Mar 2026 21:00:00 GMTColleen Dwyer, Brad Buchanan, and Dr Josie explain in this episode that symptoms after cancer treatment can be physical, emotional, functional, or financial, and they often come in clusters. Some begin during treatment, some appear much later, and some problems such as bone loss or heart disease may stay silent until they become serious. Because evidence for symptom treatment in cancer survivors is sometimes limited, care often involves shared decision-making: talking openly with providers about symptoms, personal preferences, and the pros and cons of different options.

A major theme is that survivors should not hide symptoms or try to manage everything alone. Help may come from many places, including doctors, physical therapy, occupational therapy, talk therapy, massage, exercise programs, and community resources. Brad’s story shows how recovery can involve trial and error, emotional healing, trauma processing, support for intimacy and relationships, and adapting over time as the body changes.

The episode also strongly emphasizes support groups. They help normalize what people are experiencing, reduce isolation, offer practical advice, and create meaning. Survivors may not always be ready right away, but finding the right group and staying connected can be deeply helpful. 

Overall, the message is: speak up, keep seeking support, and remember that healing after cancer is an ongoing process that is best done with a team.

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]]><![CDATA[Essential Elements of Cancersurvivorship Care: Lifestyle]]>https://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-4a8https://cancersurvivormd.substack.com/p/essential-elements-of-cancersurvivorship-4a8Thu, 05 Mar 2026 19:00:00 GMTIn this episode of the Cancer Survivor MD podcast series on essential elements of cancer survivorship care, Dr. Josie van Londen is joined by Brad Buchanan and Colleen Dwyer to discuss lifestyle and health behaviors as tools for coping and healing after cancer. The conversation explores how survivors often turn to diet, exercise, and other habits to regain a sense of control, while emphasizing the importance of balance rather than perfection. The group discusses practical guidance—such as starting lifestyle changes slowly, focusing on moderation and variety in diet (with some evidence supporting Mediterranean-style eating), and being cautious with unregulated supplements unless medically indicated. They also highlight how building a personal “toolkit” of coping strategies—movement, mindfulness, creative outlets, therapy, and community support—can help survivors process stress and adapt to life after treatment. Through Brad’s powerful personal story of recovery and adaptation after intensive cancer therapy, the episode underscores that healing is often gradual and individualized, and that survivors benefit from experimenting with different approaches while giving themselves time, compassion, and support along the way.

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]]><![CDATA[Survivorchat with Trevor Maxwell]]>https://cancersurvivormd.substack.com/p/survivorchat-with-trevor-maxwell-8eehttps://cancersurvivormd.substack.com/p/survivorchat-with-trevor-maxwell-8eeFri, 23 Jan 2026 23:00:00 GMTWe introduce Trevor Maxwell, founder of Man Up To Cancer, who shares his stage IV colon cancer diagnosis at 41 and how a rare MSI-high tumor type, immunotherapy, chemotherapy, and multiple major surgeries (including HIPEC) have helped him live with cancer for years and stay present for his family. They talk candidly about parenting through cancer, balancing hope with realism, and pushing back against toxic positivity. Trevor explains that his own depression and isolation—and the lack of spaces where men feel safe asking for help—sparked Man Up To Cancer, which now provides peer support, local chapters, retreats, and practical help to reduce isolation and redefine “manning up” as strength plus vulnerability.

Relevant links: 

  • If you have thoughts or feelings about hurting yourself, or others, please call someone near you, or your local emergency number (in USA -> call 911 or call the 988 Suicide & Crisis Lifeline at 988; outside of USA -> https://findahelpline.com).

  • https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/hipec-surgery-what-you-need-to-know

  • https://www.dempseycenter.org

  • https://manuptocancer.org

  • https://manuptocancer.org/blog1/blazinganewtrail

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]]><![CDATA[Author Chat with Fred Appelbaum]]>https://cancersurvivormd.substack.com/p/author-chat-with-fred-appelbaum-202https://cancersurvivormd.substack.com/p/author-chat-with-fred-appelbaum-202Mon, 22 Dec 2025 23:00:00 GMTIn this episode of Cancer Survivor MD, Josie van Londen and Brad Buchanan interview Dr. Fred Appelbaum of Fred Hutchinson Cancer Center about his book Living Medicine and the history—and humanity—behind bone marrow transplantation, the breakthrough that paved the way for today’s cell and gene therapies. 

Appelbaum explains what transplantation is and how it works, reflects on his path into the field and mentorship under pioneer Don Thomas, and addresses the early ethical dilemmas, medical skepticism, and later legal scrutiny that shaped standards for transparency. 

Brad adds the patient perspective through his own transplant and graft-versus-host disease experience, including discussion of treatments like photopheresis and newer GVHD therapies. 

The conversation closes by looking ahead to the next era.

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]]><![CDATA[Survivor Chat with Matthew Zachary]]>https://cancersurvivormd.substack.com/p/survivor-chat-with-matthew-zachary-3c4https://cancersurvivormd.substack.com/p/survivor-chat-with-matthew-zachary-3c4Fri, 31 Oct 2025 19:00:00 GMTA 21-year-old pianist gets brain cancer, refuses chemo to save his music, survives 30 years, founds Stupid Cancer, and now wants to organize 20 million cancer patients into a political force. Josie and Brad sit down with Matthew Zachary to talk history, late effects, parents, creativity, survivor guilt, and his next act: We The Patients. https://wethepatients.org

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]]><![CDATA[Essential Elements of Cancer Survivorship Care: Screening for Secondary Cancers]]>https://cancersurvivormd.substack.com/p/essential-elements-of-cancer-survivorship-b86https://cancersurvivormd.substack.com/p/essential-elements-of-cancer-survivorship-b86Thu, 23 Oct 2025 21:00:00 GMTBrad Buchanan, Colleen Dwyer, and I will discuss an essential aspect of cancer survivorship care. In this episode, we’ll focus on the importance of screening for secondary cancers among cancer survivors.

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]]><![CDATA[Author Chat with Joelle Kaufman]]>https://cancersurvivormd.substack.com/p/author-chat-with-joelle-kaufman-f6dhttps://cancersurvivormd.substack.com/p/author-chat-with-joelle-kaufman-f6dWed, 08 Oct 2025 14:00:00 GMTJoelle Kaufman — cancer survivor, BRCA1 carrier, and author of “Crushing the Cancer Curve Ball: A Playbook for the Newly Diagnosed (and Their Family and Friends)” — joins Josie and co-host Brad Buchanan to talk about building a practical, compassionate “approach at the plate” for life with cancer. Joelle shares how writing helped her process, why her book is deliberately modular for foggy days, the origins of her free financial-toxicity calculator, and her idea of “happiness tripwires”. The conversation lands on a memorable refrain: we don’t choose the pitch; we choose the swing.

Relevant links for this episode:

  • Joelle Kaufman:

    • Joelle Kaufman: https://joellekaufman.com

    • Kicking Cancer's Ass Podcast: https://www.kcapodcast.com

    • Joelle Kaufman Revenue Catalyst Coaching: http://www.gtmflow.com

  • Breast Cancer in Men: https://www.mskcc.org/cancer-care/types/breast-male 

  • Cold Caps: https://www.cancer.org/cancer/managing-cancer/side-effects/hair-skin-nails/hair-loss/cold-caps.html 

  • Cancer Gene Mutation Facts: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

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]]><![CDATA[Essential Elements of Cancer Survivorship Care: Cancer Surveillance]]>https://cancersurvivormd.substack.com/p/essential-elements-of-cancer-survivorship-e99https://cancersurvivormd.substack.com/p/essential-elements-of-cancer-survivorship-e99Tue, 09 Sep 2025 21:00:00 GMTIn this episode, we sit down with social worker Colleen Dwyer from Cancer Bridges to talk about one of the five key parts of survivorship care: keeping an eye out for cancer coming back, also called cancer surveillance.

We’ll share what surveillance really means, how it changes over time, and the emotions that can come with it. You’ll also hear tips for working with your health care team as your check-ups and tests gradually become less frequent—so you can feel more confident moving forward.

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]]><![CDATA[The FDA is failing rare disease patients. I’m one of them.]]>https://cancersurvivormd.substack.com/p/the-fda-is-failing-rare-disease-patients-d7fhttps://cancersurvivormd.substack.com/p/the-fda-is-failing-rare-disease-patients-d7fMon, 21 Jul 2025 23:00:00 GMTIn this powerful conversation, G [Josie] Van Londen, MD, shares her journey with primary mitochondrial disease and the life-changing impact of the investigational drug elamipretide. She describes the invisible toll of her condition, the relief of a long-awaited diagnosis, and the real-world improvements she’s experienced on treatment. As she urges the FDA to reconsider its recent denial, Josie highlights what’s at stake—not just for herself, but for the entire rare disease community.

This link contains more resources (podcasts and news articles) as well as action items (to contact legislators and FDA). 

And here is a link to the podcast transcript with links to explain the terminology/definitions. 

General Links:

]]><![CDATA[Provider Talk with Colleen Dwyer Diehl]]>https://cancersurvivormd.substack.com/p/provider-talk-with-colleen-dwyer-d64https://cancersurvivormd.substack.com/p/provider-talk-with-colleen-dwyer-d64Fri, 14 Feb 2025 13:00:00 GMTIn this episode, Dr. Josie welcomes Colleen Dwyer Diehl, LCSW, a clinical social worker at Cancer Bridges, to introduce an exciting new mini-series on cancer survivorship. 

Colleen shares her journey, the mission of Cancer Bridges, and the impactful programs they offer to support cancer patients and survivors. Together, they explore the Living Life Post-Cancer Treatment program, a structured initiative designed to help individuals navigate life after active treatment. 

They also introduce the five essential elements of survivorship care, which will be explored in depth in upcoming episodes. Whether you’re a survivor, caregiver, or healthcare professional, this episode offers valuable insights and resources for thriving beyond cancer.

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]]><![CDATA[Author Chat with Patrick Bringley]]>https://cancersurvivormd.substack.com/p/author-chat-with-patrick-bringley-441https://cancersurvivormd.substack.com/p/author-chat-with-patrick-bringley-441Tue, 04 Feb 2025 23:00:00 GMTIn this episode, we sit down with Patrick Bringley, MA, author of All the Beauty in the World, to explore his profound journey from working at The New Yorker to spending a decade as a museum guard at The Metropolitan Museum of Art. 

Patrick shares how the loss of his brother to cancer led him to seek solace in art, offering him space for reflection, healing, and a deeper appreciation of life’s beauty and struggles. 

We discuss the power of art in processing grief, the intersection of the mundane and the sublime, and how his time at the Met transformed his perspective. Join us for a heartfelt conversation about loss, love, and the unexpected paths that lead us toward meaning.

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]]><![CDATA[Caregiver Chat with Gary]]>https://cancersurvivormd.substack.com/p/caregiver-chat-with-gary-43ehttps://cancersurvivormd.substack.com/p/caregiver-chat-with-gary-43eThu, 12 Dec 2024 14:00:00 GMTCaregiving is a journey that touches many of our lives in profound and often unexpected ways. It is a role that demands resilience, compassion, and adaptability. 

In this episode, I have the pleasure of speaking with Gary Marzolf, whose lifelong experience with caregiving began at a very young age and has evolved through decades of personal challenges and triumphs. Gary’s story offers wisdom, inspiration, and insight into navigating the delicate balance between caring for others and taking care of oneself.

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]]><![CDATA[Author Chat with Chris Gabbard]]>https://cancersurvivormd.substack.com/p/author-chat-with-chris-gabbard-8b6https://cancersurvivormd.substack.com/p/author-chat-with-chris-gabbard-8b6Tue, 26 Nov 2024 23:00:00 GMT“A Life Beyond Reason: Chris Gabbard on Loss, Caregiving, and Spiritual Growth”

In this deeply moving episode, Chris Gabbard, PhD, MA, professor and author of A Life Beyond Reason, shares his profound journey as a caregiver to his son August, who was born with severe disabilities due to a mismanaged birth. Chris reflects on the emotional and philosophical challenges he faced during and after August’s life, discussing the profound spiritual and personal growth that caregiving brought into his life. Alongside co-hosts Brad Buchanan and Dr. G van Londen, Chris explores themes of trust in the healthcare system, the therapeutic power of writing, and the ethics of caregiving. This conversation will resonate with anyone navigating grief, caregiving, or searching for meaning in life’s most challenging moments.

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]]><![CDATA[Author Chat with Jill Squire]]>https://cancersurvivormd.substack.com/p/author-chat-with-jill-squire-6d8https://cancersurvivormd.substack.com/p/author-chat-with-jill-squire-6d8Sat, 21 Sep 2024 22:00:00 GMTDiscover the essential tools and wisdom to empower yourself or a loved one through a cancer journey in our latest episode. Featuring author Jill Squire, BSN, RN, OCN,  and her groundbreaking book "Cancer Journey Guide and Journals: Empowerment in Diagnosis and Treatment and Beyond," we explore practical strategies to support cancer patients from diagnosis through long-term survivorship. 

This conversation promises invaluable insights into self-advocacy, effective communication, and the significance of tracking symptoms and treatments in a user-friendly format.

Engage in a heartening discussion on the power of self-care activities like birding and mindfulness, which are essential tools for managing symptoms and maintaining mental wellness. Learn how to build a robust cancer care team, navigate tough conversations with loved ones, and utilize guided journals to keep track of your journey. By sharing personal stories, practical advice, and compassionate guidance, our panel aims to empower you with the knowledge and confidence to take charge of your healthcare experience.

We also delve into the critical aspect of building trust with healthcare providers and the role of daily symptom tracking in shared decision-making. Jill Squire provides expert tips on creating useful diaries to document experiences, which can significantly enhance communication with healthcare professionals. Concluding on a light-hearted note with a pun to bring some humor, we express gratitude to Jill and reflect on the book's unique value for anyone facing a challenging diagnosis. Join us for this heartfelt and informative episode designed to uplift and empower.

Relevant links for Jill Squire: 

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]]><![CDATA[Survivor Chat with Brad and Josie: Cancer Treatment Complications Part 2]]>https://cancersurvivormd.substack.com/p/survivor-chat-with-brad-and-josie-ccehttps://cancersurvivormd.substack.com/p/survivor-chat-with-brad-and-josie-cceThu, 29 Aug 2024 13:00:00 GMTCould you endure the excruciating pain of cancer therapy complications and still find gratitude in the experience? Join us as Brad shares his gripping story of survival following a stem cell transplant in early 2016. Brad takes us through the agonizing process of total body irradiation, chemotherapy, and the harrowing reality of developing severe acute graft-versus-host disease (GVHD). His gut-wrenching account of intense pain, temporary blindness, and gastrointestinal distress, coupled with the initial misdiagnosis by his medical team, gives us a raw glimpse into the grueling battle he faced. 

Through Brad's narrative, we delve into the intricacies of managing a hostile immune system and the long-term effects of cancer treatment, such as bone health deterioration, sexual dysfunction, and difficulty swallowing. Brad's insights emphasize the importance of self-advocacy and informed decision-making within the medical landscape. Despite the overwhelming challenges, Brad's story is one of resilience and gratitude, highlighting his appreciation for the life-saving procedure and the crucial role of extracorporeal photophoresis (ECP) in his recovery. 

We also explore the emotional and relational toll of chronic illness as Brad candidly discusses the strain on his mental health and family dynamics. From managing severe health conditions while shouldering family responsibilities to the bittersweet reality of early retirement due to disability, Brad's journey sheds light on the profound impact of chronic illness on personal and professional life. 

The episode concludes with a heartfelt exchange between Brad and Josie, filled with mutual gratitude and reflections on resilience. It leaves listeners with a sense of hope and admiration for Brad’s extraordinary strength.

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