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Advocacy at Work: Daily Summaries Delivered
by One moment. One pivot. One purpose.
Every advocate has a moment — the diagnosis, the loss, the phone call that rewired everything. Advocacy at Work explores the pivotal stories of patients, caregivers, and changemakers who turned their hardest moments into their greatest purpose. Hosted by cancer survivor and patient advocate Tim McDonald. One moment. One pivot. One purpose. www.advocacyatwork.com
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- 5 days ago31 min
Fundraising Is Advocacy, Too
Jerry Telson and I didn’t start with the same definition of advocacy.When I asked him how he defines it, he explained that his work with the National Pediatric Cancer Foundation isn’t focused on legislation. It’s focused on funding pediatric cancer research.But that’s exactly why I see it as advocacy.In my book, From Patient to Advocate, I describe four areas of advocacy: legislative, research, awareness, and fundraising. During our conversation, I explained that without fundraising, I don’t think the other three exist.Jerry’s work helps make those connections visible. Raising awareness can lead to a relationship. A relationship can become a partnership. That partnership can help fund research or connect a family with support.They’re different contributions, but they don’t operate separately.A haircut became something moreJerry came into this work after a long corporate career. His connection to the foundation began through Cut for a Cure, a fundraising effort that gave employees a chance to raise money and shave the boss’s head.The teams got behind it. The haircut was fun. But what stayed with Jerry was handing over the money they had raised.He described that as the most gratifying day of his working year.Later, after joining the foundation as an employee, someone at a networking event asked what he did. His answer came out without hesitation: “Helping save some kids’ lives.”He stepped away afterward to call his wife and tell her how different it felt to describe his work that way.Jerry’s role isn’t treating children or conducting research himself. It’s helping bring resources to that work. His answer showed how directly he connects his daily responsibilities with the reason behind them.For patients and families, that distinction matters. We meet the people delivering care, but we may never meet everyone whose work helped make the research behind that care possible.Fundraising is one part of that larger effort. It deserves scrutiny and accountability, but it also deserves recognition as work that supports the mission.Sometimes the contribution is a connectionOne story Jerry shared involved a child who wanted to be a monster truck driver, specifically connected to the Sparkle Smash truck.The foundation’s Fashion Funds the Cure events include a “dream walk” that connects children with the things they want to do when they grow up. Making that particular dream happen meant finding people who could help.Jerry and his colleagues were already pursuing contacts when he happened to meet a woman whose family built monster trucks. Her brother had built that truck.That conversation became a connection. According to Jerry, the people involved helped arrange a customized golf cart incorporating a piece of the truck, along with other experiences and items for the child. Later, when her health circumstances changed, special accommodations helped make a visit with the truck and driver possible.During the interview, I told Jerry that imagining the child’s reaction was bringing tears to my eyes.That moment wasn’t a research outcome, and it shouldn’t be confused with one. It was a chance for a child to experience something she cared about while going through an illness that had already asked so much of her.It also showed something practical about giving. The woman Jerry met didn’t need to write a large check. She recognized a connection she could make and acted on it.People sometimes underestimate what they have to offer because they’re thinking only about money. An introduction, a professional skill, help organizing an event, or a few hours of reliable volunteer work can all serve a purpose.The useful question is what an organization actually needs and whether you’re in a position to help meet it.Families need more than good intentionsJerry also described connecting a family he knew with the foundation’s healthcare navigator.He explained that the navigator brings both pediatric oncology nursing experience and experience as a parent of a child with cancer. The service, as he described it, helps families find resources and navigate available support.Jerry made a distinction between his response and hers. He can say he can only imagine what a parent is going through. She brings a different understanding to that conversation.There’s room for both contributions.Someone doesn’t need to have lived through the same diagnosis to help. But recognizing the limits of your own experience is part of helping responsibly.For organizations, that means knowing when to connect a family with someone better equipped to answer their questions. For supporters, it means listening before deciding what would be useful.For patients and caregivers, it als
- 1 weeks ago30 min
What Patients See, What Pharmacists See, and Why Both Matter
What happens when patients and healthcare professionals are experiencing the same problem, but seeing very different parts of it?In my conversation with Brooke Boring, she described something that came up when the Hematology Oncology Pharmacy Association, better known as HOPA, brought patient advocacy organizations and professional organizations together around chemotherapy drug shortages.Some patient organizations knew about the shortages from the news but weren’t hearing the same concerns directly from their communities. Meanwhile, pharmacists and other healthcare professionals were working through difficult decisions and finding ways to keep care moving.Brooke’s explanation was that healthcare teams were doing so much work behind the scenes that patients didn’t necessarily see the disruption.That doesn’t make either perspective wrong. It shows why we need both. A patient can explain what it feels like to receive care. A pharmacist can explain what it took to make that care possible. Putting those experiences together gives us a fuller picture of what needs to change.The person on your care team you may not knowBrooke is HOPA’s associate director of health policy and advocacy. Her work includes legislative advocacy, patient education, and bringing the patient perspective into the organization’s work.I serve on HOPA’s patient advisory panel, so I’ve had the opportunity to see some of that work firsthand.But when I was going through treatment, I didn’t even know I had an oncology pharmacist.That’s why I wanted Brooke to explain what these professionals actually do.She described work that goes well beyond preparing or checking medications. Depending on the care setting, oncology pharmacists may help patients understand treatment, address side effects, and work through barriers to getting medications. That can include calls to insurers or identifying patient assistance options.Some of that happens directly with patients. Some happens where we never see it.As Brooke pointed out, patients may not know about an access problem because someone has already been working to resolve it.During our conversation, I encouraged patients and caregivers to ask about the oncology pharmacist on their care team. Get to know who they are and how to reach them.When you’re trying to understand treatment or explain what you’re experiencing, it helps to know who you can ask. You shouldn’t have to figure out every part of the system before you can get help navigating it.Your experience belongs in the conversationI ask every guest how they define advocacy. Brooke’s answer was broad: arguing for a cause.That might mean meeting with a member of Congress. It might mean sending a message, making a call, or helping someone understand an issue you care about.“I think there’s a place for everyone in advocacy,” she said.That matters because policy can feel like something other people do. People with the right credentials, the right vocabulary, or the confidence to walk into a congressional office.But Brooke described how the atmosphere in a meeting can change when a patient introduces themselves. Staff members turn toward that person and ask about their experience.The pharmacists bring their own stories, too. They can explain why they entered oncology, what they do every day, and the barriers they encounter while helping patients.Those contributions aren’t interchangeable. They give different meaning to the same issue.A patient might explain what a delay meant for their family. A pharmacist might explain the steps involved in trying to resolve it. Together, they help connect a policy discussion to what is happening in someone’s life.You don’t have to know everything about legislation to explain what happened to you. And you don’t have to tell every part of your story to make a useful contribution.Patient involvement shouldn’t stop at the invitationHOPA’s work also offers something for professional associations, healthcare organizations, and industry organizations to consider.Brooke described involving patients in the development of education materials, asking what resources they need, and including patient perspectives in conference sessions alongside scientific and operational discussions.There’s a difference between asking someone to review a resource and asking what resource would have helped them in the first place. Both can be useful, but the second question creates room for patients to influence the direction of the work.For organizations, that raises some practical questions:* Are patients involved early enough to shape the priorities?* Are you asking what they need, or only asking them to respond to what you’ve already developed?* Can they participate in ways
- 2 weeks ago33 min
The Person Behind the Patient Advocate
Daniel G. Garza was already thinking about making a video on the drive home from his anal cancer diagnosis.He had spent years speaking publicly about living with HIV. Sharing what was happening to him was familiar territory. So when he received another diagnosis, he went straight to what he knew: telling people about it.He recorded 30 days of videos in English and Spanish. Some captured good days. Others showed tears, fear, and what he described as “ugly crying.” People reached out to say those videos helped them understand their own diagnosis or what someone they loved was experiencing.But helping other people came with something Daniel didn’t fully recognize at the time. He hadn’t given himself space to process what had happened.“The balance of that is that I had no privacy,” he told me. Years later, he sought therapy to work through what he hadn’t made room for then.That’s an important part of this conversation. A story can help someone else while the person telling it is still trying to understand it themselves.Advocacy doesn’t always start with a planDaniel is a long-term survivor of HIV and anal cancer, and the director of outreach for Cheeky Charities. His work connects with HIV, cancer, and LGBTQ+ communities, drawing on experiences that began long before anyone introduced him as an advocate.He talked about being bullied as a child, learning to defend himself, and then wanting to protect other people. After being outed at 17, he became someone other gay people could turn to when they didn’t feel supported.When he was diagnosed with AIDS in 2000, advocacy started closer to home. He was learning from doctors and nurses while trying to explain HIV to his family.Then an opportunity to speak on Univision brought his experience to a much larger audience. Invitations to nursing schools and other settings followed. What began with explaining his own life became a way to help others understand lives they might not otherwise encounter.When I asked Daniel how he defines advocacy, his answer was straightforward:“Taking my lived experiences and using them to be of service to other people.”There’s room in that definition for more than a conference presentation or a public campaign. It can mean helping someone prepare a question, sharing something you learned, or listening without trying to fix everything.It also leaves room for people who don’t want to tell their story publicly. Being of service doesn’t require giving everyone access to your life.What people don’t seeDuring our conversation, I talked about how people see an advocate on television or at a conference and think that’s what advocacy looks like. They don’t necessarily see what it took to get there or what comes along with it.Daniel described people telling him how busy he looked on social media. He was traveling, working, and seemingly doing well. What they didn’t see were the mornings when his bones hurt or the exhaustion after a day of calls, computer work, and preparing another speech.He was clear that he loves his work. He was also clear that his body has been through a lot. Both can be true.A person can be good at explaining their experience and still need help carrying it. They can make people laugh and still have difficult days. They can show up prepared without having everything worked out.For patients and caregivers, Daniel’s experience offers an important distinction: sharing your story and processing your story aren’t necessarily the same thing.You can decide that something is private. You can change your mind about what you’re comfortable sharing. You can take time before turning an experience into something useful for someone else.The value of your experience doesn’t depend on how quickly you make it public.What organizations can take from thisFor healthcare organizations, professional associations, pharmaceutical companies, diagnostic companies, and biotechnology companies, there’s a practical question here:When you invite a patient advocate to participate, are you making room for the person or only the contribution you want from them?Daniel’s account of pain, preparation, and public visibility gives that question context. So does his wish for more funding and research support, particularly for the Latino and LGBTQ+ communities he works with. He wants to reach more people and exchange ideas with advocates in other places. The desire is there. Resources remain part of the challenge.An invitation alone doesn’t address those needs.Applied to patient engagement, this conversation points toward a few concrete practices:* Ask what someone needs to participate rather than assuming their previous experience makes support unnecessary.* Make it clear that an advocate can decline a question or keep part of their story private.<p
- 3 weeks ago28 min
When Questions Become Advocacy
There are moments when you realize that caring about someone is not the same as knowing how to help them.For Andrea Katz, that moment came in 2013, when her mother was diagnosed with stage 4 cholangiocarcinoma, a cancer of the bile ducts. It was a disease Andrea and her family had never heard of. Information was difficult to find. The diagnosis moved fast. Her mother died 44 days later.That experience changed the direction of Andrea’s life.Today, Andrea is an integrative nutrition health coach, founder of Best You Nutrition, and a member of the GI Cancers Alliance Patient and Caregiver Advisory Board. She specializes in digestive health, but her work is also about something larger: helping people understand that they can participate actively in their own care and in the care of the people they love.Her story is a reminder that advocacy does not always begin with a title, a nonprofit, or a big public platform. Sometimes it begins with staying up late, looking for answers, and deciding that you are going to ask the questions others may be afraid to ask.The questions that needed askingAfter Andrea’s mother was diagnosed, Andrea did what many caregivers do. She went looking for information.She researched cholangiocarcinoma, treatment options, clinical trials, surgeries, and whether there might be care available outside their immediate area. She was not trying to second-guess the medical team. She wanted to walk into the next appointment informed enough to ask better questions.Her father was hesitant.Like many people, he had grown up with the belief that doctors are authority figures and that asking too many questions could somehow be seen as challenging them. Andrea understood the concern, but she also knew that her mother’s care was too important to let fear keep the family quiet.“I wanted to learn as much as I could in a short amount of time so that the next morning, when we had an appointment with her physician and the oncology team, I had some informed questions,” she said.Andrea came to the appointment with about eight questions. Her father told her she should not ask them. But when she asked the oncologist whether he had time to talk, the answer was yes.The doctor did not take offense. He answered what he could, promised to follow up on what he did not know in the moment, and told Andrea’s father that he wished more families came to appointments with those kinds of questions.That matters.Too many patients and caregivers hold back because they do not want to appear difficult, uninformed, or disrespectful. But asking questions is not the same as questioning a clinician’s expertise. It is a way to understand the choices in front of you and to make sure the care plan reflects the person living through it.Andrea put it simply: “Nobody cares more about your health than you.”That is not an indictment of doctors, nurses, or loved ones. It is a reality of healthcare. Clinicians have many patients. Families have their own fears and responsibilities. The patient, or the person closest to them, is the one living in the body, managing the symptoms, and carrying the day-to-day impact of the diagnosis.Being an active participant can help make sure important details do not get lost.From loss to a new directionAndrea had always been interested in health. She grew up as an athlete and earned her first degree in psychology. But after losing her mother, her curiosity about one rare gastrointestinal cancer expanded into a deeper interest in digestive health.She went back to school and became a certified integrative nutritionist. Her psychology background did not disappear. It became part of how she sees nutrition and wellness.Food is not just food.It is family tradition. It is comfort. It is routine. It can be stress, reward, fear, culture, and memory all at once. That is why advice that sounds simple on paper can be difficult to apply in real life.“If it was that easy, we wouldn’t have an obesity epidemic in North America,” Andrea said. “We wouldn’t have heart disease like we have or diabetes like we have.”Her work focuses on digestive health, but she does not treat the gut as an isolated part of the body. She sees it as connected to mood, sleep, stress, immune health, skin conditions, appetite, and the way people feel in their everyday lives.People often come to her wanting help with one specific concern. Maybe they are not sleeping well. Maybe they are stressed, experiencing digestive symptoms, struggling with energy, or trying to make changes after a diagnosis. Andrea starts by helping them look at the bigger picture.Instead of chasing one symptom at a time, she asks a question many people do not expect:How is your gut?That quest
- Oct 1, 202629 min
The Finance Guy Who Became the Bridge Between Patients and Nuclear Medicine
Jud Kimmel spent most of his career in public policy and finance.He wasn’t a scientist. He wasn’t a doctor. He wasn’t someone with a natural pathway into cancer advocacy.Then in September 2022, almost four years ago, he got diagnosed with stage 4 grade 3 small bowel neuroendocrine tumor.And everything changed.The Symptoms Nobody NamesThe weird part is that the symptoms that got him to his diagnosis were so strange and confusing that nobody could quite figure out what was happening.He had gastrointestinal problems that came and went randomly. Out of nowhere, he’d get shortness of breath without any exertion. He’d have facial flushing, hot and intense, but without any sweating.These weren’t the kind of symptoms you type into Google and get a clear answer. These weren’t “go to the emergency room right now” symptoms. These were the kind that made everyone scratch their heads.What he later learned was that these were symptoms of carcinoid syndrome.His neuroendocrine tumor was functional. That means it was secreting hormones into his bloodstream. And those hormones created this strange collection of symptoms that led doctors to his diagnosis.“In some ways,” Jud says, “I’m thankful I had a functional NET. A lot of people, their NETs will grow and grow with no signs at all until they cause a physical obstruction or some other acute problem.”So the symptoms that made his life miserable for over a year? They probably saved his life.What NET Actually IsHere’s the thing. Most people hear “neuroendocrine tumor” and their brain shuts down.It sounds like brain cancer. It sounds like something your neuroendocrine system—which is in your brain, right?—is attacking.But that’s not what NET is.You have neuroendocrine cells all throughout your body. They’re in your gut. They’re in your lungs. They’re in various organs. When those cells go rogue, that’s when NET develops.It’s not a tissue cancer. It’s a cancer that forms from neuroendocrine cells. And it’s a solid tumor, but it’s distinct from other kinds of cancers.The umbrella term is NEN, neuroendocrine neoplasia. Under that umbrella, you’ve got NETs and NECs and insulinomas and all sorts of other variations. But they all have one thing in common. They form from neuroendocrine cells that started misbehaving.Historically, NET was considered rare. And it was. But incidence is increasing. Some of that is probably better imaging and better testing. But a lot of it is probably that NETs went undiagnosed for years. People were told their symptoms were something else. And even after death, it wasn’t always attributed to NET.That’s how misunderstood this cancer has been.The Specialist He FoundJud was fortunate in one crucial way.His diagnosing oncologist, a general community oncologist, knew enough about NET to know he needed to see a specialist. And he referred Jud to a NET specialist at Mayo Clinic.This is unusual. A lot of NET patients go a very long time before they ever see a specialist. Some never do.But Jud got that referral quickly. And very soon after his diagnosis, he was enrolled in a clinical trial.His first line of treatment was radioligand therapy, or RLT. This was cutting-edge nuclear medicine. Not traditional chemotherapy. Not radiation therapy as most people understand it.Nuclear medicine imaging that could help target cancer cells. And then nuclear medicine therapeutics to treat those cells.It was a whirlwind introduction to being a cancer patient. And it sparked something in him.Curiosity.When Lightning StruckFor a while after his diagnosis, Jud did different things on different tracks. He was involved in clinical trial advocacy. He was learning about radiotheranostics. He was connecting with other cancer patients, especially men.But the real moment came in 2024.Novartis asked him to speak at a full team meeting. Everyone involved with radioligand therapies. Doctors. Scientists. Researchers. Marketing teams. Operations teams. All of them.Jud shared his journey. How he’s doing. His perspectives on receiving this treatment and what it meant for his life.And afterward, something happened that he didn’t expect.So many people told him they’d never met a patient before. They’d never seen the actual human impact of their work. They’d spent years developing drugs and therapies and strategies. But they’d never sat in a room with someone who had actually received what they’d created.“It was kind of like lightning struck,” Jud says. “Afterwards, so many people told me how they had never met a patient before, and it was so powerful for them to see how their work is actually helping people.”That moment
- Sep 17, 202629 min
The AI Expert Who Became His Own Case Study
John Duffield was living a completely normal life.He was working in AI. Fortune 500 companies. Helping healthcare organizations rethink how they work. Staying on top of an emerging field that was changing everything.He was a previous triathlete. Healthy. Active. Playing with his kids. No sense of what was coming.Then in June 2024, he ended up in the neurology ward at UCLA Ronald Reagan with a brain bleed.He didn’t go to the hospital expecting a brain bleed. He certainly didn’t go expecting what came next.The Double HitWhile John was recovering from the brain bleed, the cardiologists came in.They’d heard a murmur on his scan. They’d seen it. A bicuspid aortic valve. The doctors said some people live their entire lives like this. Others need surgery.But the news hit him and his wife hardest because they were already reeling. They were vulnerable. They’d just gotten news about a brain bleed. Now this.“It was like a bang, bang, double hit,” John says. “It was an incredible hit to take for my wife and myself, and having to keep that in and not tell my children and too many until we really knew what was happening.”They got back to the East Coast and started meeting with cardiologists almost immediately.Further tests revealed it wasn’t just a bicuspid valve. He had severe regurgitation, a leaky aortic valve. And an aneurysm measuring significantly wide.The window was initially two to ten years. How do you live your life knowing major surgery could be coming? How do you function with that hanging over your head?Then the tests came back clearer.The window shrank. From years to weeks. To a month.Game on pretty quick at that point.The Blessing of Time (And Choice)John was very blessed to have great insurance and the ability to meet with surgeons quickly.But more than that, he had a choice. Which type of procedure. Which surgeon. Which approach. He could see who he felt most comfortable with and choose the path forward.Many people don’t get that. Many people get emergency situations with no planning time. Chaos. Panic. Everything happening at once.John had time to worry. Time to process. Time to think about what was coming.“I’ve since met with many patients who have been through cardiac procedures,” he says. “Some faced emergency situations with no planning time. Others had the time to plan like I did. Both are rough in different ways.”But John made a choice in that time. A choice to lean into his strengths.AI as a CompanionJohn works in AI. He’s spent years helping healthcare organizations transform with artificial intelligence.But now he was a patient facing open heart surgery.And he realized something. He could use all that expertise on himself.He could take his clinical narrative. Everything about his diagnosis. All the test results. The options. Open heart surgery. Sparing his own valve. Replacing it with a mechanical valve. The recovery process.All of it.And he could turn it into something his children could understand.His daughter was nine years old.She was obsessed with Taylor Swift.So John took his entire clinical narrative and fed it into AI with one request: explain this through Taylor Swift lyrics and trivia.“It was truly like magic,” he says.AI took the complexity of open heart surgery and reduced it to the context his nine-year-old could understand. Songs she loved. Lyrics that matched his journey. A way to explain what was happening to daddy’s heart that didn’t sound like a medical textbook.His wife and John looked at each other. “Gosh, this is it. You’ve got to make a song for her.”So he did. He directed it. ChatGPT composed it and wrote it. Another AI tool handled the music production. And John gave his daughter a song that explained her father’s surgery in her language.He did the same thing with his son using basketball mechanics. Complex medical reality translated into the language of the game he loved.“I realized that we are at the emergence of a time where we can take complex, turn it into clarity through the context that a person can truly understand and relate to,” John says. “And I don’t think we’ve ever been able to do that before.”AI as a Second Voice, Not a Second OpinionThere’s a distinction John is careful to make.AI can be powerful as a second voice. A companion. Something to help you think through things. Something to help you ask better questions.But AI cannot give you a clinical diagnosis. Cannot give you a definitive on what something is or what it isn’t.And it can never put a hand on your shoulder. Can never give you the gentle voice of a family member. Can never give you the expert bedside manner of a clinician.“The most powerful use of AI,” John says, “is at 2:00 AM before open
- Sep 10, 202639 min
The Outlier: How a Pancreatic Cancer Survivor Is Turning His Survival Into Science
The first symptom was acidity in his stomach.Yann Bizien was living a standard life in Paris in 2017. Software industry. Account manager. Selling solutions to enterprise. A four-year-old daughter. Pretty much standard health. He wasn’t the kind of guy who went to doctors. He did a little bit of sports. He had a healthy life.Then came the stomach acidity. It increased. And one day he couldn’t eat anymore.In 2017, at age 35, the diagnosis came back: stage 4 pancreatic cancer.“Even the word cancer was not possible to associate this with my life,” he tells me. “It was a shock.”Most people don’t know much about pancreatic cancer. Most people who get it don’t survive it. Five-year survival rates hover around 11 percent. Stage 4 is essentially a death sentence.Yann’s doctors never talked about being cured. They talked about managing the disease. They talked about hoping. They didn’t talk about recovery.The Long RoadWhat Yann didn’t know when he started his chemotherapy was that he would end up taking more than a hundred cycles of it.He stayed in the hospital for more than five years.The drug was FOLFIRINOX. If you know anything about cancer treatment, you know this name. It’s one of the most brutal, most toxic chemotherapy regimens out there. It destroys your body in order to save your life. Or tries to.He was so tired. So much nausea. So much being sick that he’d spend whole days after chemotherapy in his bedroom doing nothing, conscious of being useless. That’s the hardest part when you’re a young father. You can’t play. You can’t be dynamic. You can’t be the person you were.Two weeks between cycles. First week awful. Second week starting to feel better. Then back to the hospital.But something was working. After six rounds, the doctors did their blood tests and scans. They couldn’t even measure how many cancer cells he had anymore. They’d gone so low the tests couldn’t detect them.“I remember I took an Excel file and said, ‘Okay, so it’s decreasing each time. It’s so encouraging. I think in six months I will be here,’” he says.He charted his cancer markers like a data scientist tracking a project. Because even in the middle of his disease, he had to believe in something. He had to have a goal.The Family ProjectAt some point early in his treatment, his oncologist said something that changed his perspective.“Yann, we’re going to preserve your fertility in case you want to have another child. Don’t think about it yet. But we’re doing it first. Then if you have the possibility, you can think about it.”Most people in his situation would have thought: I might not survive. Why would I have another child?Yann thought: I’m confident I’ll beat this. And I always wanted a second child.So he said yes.More than three years after his diagnosis, his second daughter was born in 2020.“This is one benefit from cancer,” he says, “even if it’s a kind of special life.”The RelapseIn late 2021, more than four years after his diagnosis, Yann felt pain. Not specific pain. But close to where the pancreatic tumor had been.He was afraid. He talked to his oncologist immediately.“Don’t worry. Probably nothing. We’ll wait and see how it evolves,” they said.It evolved badly.His cancer markers started going up again. And when they finally did a PET scan, the diagnosis came back: relapse.“It was devastating,” he says. “I had the sensation of losing four years of treatment and tough treatment. And now we have to go back.”He went back on FOLFIRINOX. He already knew what it would do to him. He already knew the pain, the exhaustion, the weight loss.But this time, his oncology team had a different idea. They talked about a surgeon. They wanted him to see a specialist.Yann was confused. The doctors had always told him he wasn’t eligible for surgery. Surgery was for early-stage patients. Stage 1, maybe stage 2. Not stage 4. Never stage 4.The Surgeon’s Different StoryBut the surgeon had a completely different perspective.“You’re young,” the surgeon said. “And I’m looking at your history. Yes, you had a relapse. But when I look at your metastasis in the liver, it hasn’t moved for years. That suggests these probably aren’t cancer cells. If we look at your whole medical history, you might not actually be stage 4 anymore.”This was the first time anyone had suggested such a thing.“And since you’re a very good responder to chemotherapy,” the surgeon continued, “and you’re young, the Whipple surgery might be your only shot at a cure. You have to take it.”For Yann, it was like someone had given him permission to hope again.He did six more rounds of chemotherapy to shrink the tumors. Then, in summer 2022, he went into surgery.He was calm. He knew he was in good hands. They open
- Aug 20, 202629 min
The Discipline That Almost Killed Him
A retired special forces colonel. A stage 3C colon cancer diagnosis. And how the same discipline that made him a warrior almost took him downThere’s a question that comes up early in most cancer conversations. “Were you having symptoms?”For Dr. Lawrence Henry, the answer was yes. He had them all. Bloating. Blood in his stool. Pain.But he also had something else. Twenty-six years of military discipline. A mission-first mindset that had gotten him through jump training, special operations, multiple deployments to Central America, South America, Afghanistan, Iraq, Pakistan.So he rationalized it. The symptoms were just the fallout from those exotic places. Indigestion from unfamiliar food. Nothing to worry about.“I rationalized it,” he tells me. “That’s what we do.”The Colonoscopy He Didn’t WantIn 2019, before retirement, Lawrence had a colonoscopy. They found some polyps. Removed them. Life went on.He retired in February 2020.His cancer diagnosis came in 2021.You know the screening guidelines. Colonoscopies every five years, maybe every three, sometimes every ten. So nothing could really be wrong. He’d just been through a thorough medical physical. The whole out-processing for military retirement. Nothing was coming.But something kept pushing him. And one day, despite all his resistance (the preparation was the real reason he didn’t want to do it), he finally scheduled a colonoscopy at the Tampa VA.The day the doctor came back, he didn’t even know what a malignant tumor meant.He was just worried about the graham crackers and ginger ale. He was starving.Then it started sinking in. The tumor was trying to break through the organ. It was about to become something much worse.When a Green Beret Has to Let GoThat’s when everything shifted.“I’m going to beat it,” he initially said. That’s what Green Berets do. You have an obstacle, you take it down. You don’t sit with it. You eliminate it.But cancer doesn’t work like a military mission.And Lawrence had to do something that went against every instinct in his bones. He let go of the mission.“I gave the mission up to a group of people I did not even know,” he says. “I’ve vetted all kinds of missions over 26 years. I made sure I had the right people, the right equipment, the right funding. But for this mission, the mission of a lifetime, I just gave it up and didn’t ask any questions.”It was terrifying. It was also necessary.The Tampa VA team did a wonderful job with his treatment. Surgery first, a robotic laparoscopic procedure to remove the affected portion of his colon and lymph nodes. Then 12 rounds of chemotherapy.Every other week he’d come in on Tuesday for intravenous treatment. Then they’d send him home with what he calls the boat anchor. That’s the chemo pump he had to carry until the traveling nurse came on Thursday to pick it up. This was during COVID, so everything was careful, cautious, isolated.The side effects were predictable. Peripheral neuropathy in his hands and feet. Exhaustion.But around week six, something changed.The Moment He Advocated for HimselfHe noticed he was labored walking up the stairs. His heart was beating hard just from simple tasks. He was sweating a lot.“No, you’re doing fine,” his oncology team said. “Just keep going.”He pushed back. “No, I insist. I need a CT scan now.”When he insisted, the Colonel came back. And when they did the scan, they found blood clots in his legs and his lungs.The oxyplatin was causing the reaction. They pulled him off it immediately. He’d run his course with Tampa VA.Moffitt Cancer Center, right across the street, took him in. They laid out his options. Do nothing. Get back on oxyplatin. Try something else. Something different. They informed him. They let him decide.He finished his chemotherapy at Moffitt.That moment when he pushed back, when he demanded his own voice be heard, that’s when he realized something crucial. He couldn’t even advocate for himself. And if he couldn’t do it, what about everyone else?From Colonel to Credible MessengerAfter beating cancer, Lawrence could have done what plenty of people do. He could have retired quietly. Lived his life. He’d had a military career. He’d beaten cancer. That’s enough.But there was something in him that wouldn’t let him sit still.“The way I couldn’t advocate for myself... how about Larry Henry from East Orange, New Jersey? How about Larry Henry from Long Branch, New Jersey in underserved communities? Who’s helping them?”He turned himself into what he calls a credible messenger. Not just someone with a story to tell. Someone with lived experience, yes. But also resources. Predictability. Show up on time. Follow through. Be someone people can trust.“I’m going to
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About Advocacy at Work
Every advocate has a moment — the diagnosis, the loss, the phone call that rewired everything. Advocacy at Work explores the pivotal stories of patients, caregivers, and changemakers who turned their hardest moments into their greatest purpose. Hosted by cancer survivor and patient advocate Tim McDonald. One moment. One pivot. One purpose. www.advocacyatwork.com
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