Amy is in her mid-40s and loves the outdoors—especially biking, hiking, and walking her dog. In the fall of 2018, she felt a lump on her neck, and when it did not go away, she visited her primary care doctor. After many tests, she was diagnosed with Stage 4 lung cancer that had spread to her lymph nodes and femur (thigh bone). She was devastated and scared. A few weeks later, Amy started treatment with radiation and a medicine that helps the body’s immune system fight cancer. This combination can get cancer under control but can cause side effects. After a month, Amy’s cancer doctor recognized that she could use an extra layer of support to deal with her symptoms and stress. A palliative care nurse started to visit her at home every week and was available by phone whenever Amy needed to reach out. She helped Amy through her difficult treatments, both physically and emotionally. The goal was to get her back to feeling like herself again, which to her, meant being active and riding her bike. This is Amy’s palliative care story.
Rae Anne, a cancer survivor and former palliative care patient, sits down with Dr. Anthony Back, a palliative care and cancer doctor. During their conversation, they discuss how the palliative care team sees the patient as a person, focusing on their individual goals. They also talk about how palliative care helped Rae Anne and her family manage her symptoms and understand the path forward.
After struggling with shortness of breath for many years, Betsy was referred to a special lung care clinic. Worsening symptoms limited her ability to remain active, which in turn led to anxiety and depression. She struggled to care for her home and visit with friends; and felt like a burden to her husband. Betsy’s world was getting smaller. At the lung care clinic, she met Dr. Patty Fogelman, doctor of nursing practice – who is trained to treat lung disease and as a palliative care provider. At the time, Betsy, a retired nurse, didn’t have an in-depth understanding of palliative care. In the years to come, she and her husband, and their family learned how palliative care manages many symptoms, and eases the many burdens faced by those living with serious illnesses. It also meant that Betsy learned new ways to enjoy her life. This is Betsy’s palliative care story.
Rae Anne, a cancer survivor and former palliative care patient, interviews Dr. Diane E. Meier, a palliative care doctor and director emerita of the Center to Advance Palliative Care. During their conversation, Rae Anne shares how palliative care helped her and her family. Together they discuss the benefits of palliative care, how the team takes care of the patient and caregivers, and more.
Alzheimer’s disease and dementia are mostly known for memory loss that worsens over time, but it comes with a range of complex needs – for the person diagnosed and the family. And the health needs and safety concerns for all involved typically increase as the disease progresses. Ann, a 92-year-old mother, grandmother, and former nurse, has been living with dementia for about 7 years. She also has COPD and heart problems. Ann has been able to stay in her own home with the help of her daughter Holly, care from home aides, and a palliative care team. Holly and her family know firsthand that the palliative care team improves the quality of life for people with dementia and their caregivers by adding a layer of support. This is Ann and Holly’s palliative care story.
The COVID-19 virus is still circulating in the U.S. and millions of people are still testing positive. Thankfully, most who come down with COVID-19 don’t have to be hospitalized. Even so, for many the symptoms can be extensive and recovery can take weeks or months. Listen to one woman’s COVID-19 experience, including the palliative care she received that helped keep her at home, and how she coped through six weeks with more than a dozen different and debilitating symptoms. This is Bobye’s story.
Sixty-six year old Joni knows all too well that living with the lung condition called chronic obstructive pulmonary disease – or COPD – can be stressful. The main symptom is shortness of breath, which worsens over time. The disease and treatments also cause coughing, wheezing, tremors, and emotional effects, such as anxiety and panic attacks, depression, and insomnia. When Joni’s lung doctor of more than a dozen years referred her to a palliative care doctor, the goal was to address the worsening symptoms from the illness and its treatments, and help Joni live her life in the fullest way possible. This is Joni’s palliative care story.
As a speech language pathologist for young children, Ilene’s skills as an educator, careful listener and problem solver were keys to her career success. These factors also have played an important role for her through the many years she’s been treated for advanced ovarian cancer. It was a surprise diagnosis for the 68-year-old New Yorker that came in the fall of 2015 and changed her life dramatically. She had a growing number of symptoms and side effects from treatments and surgery. When her cancer doctor referred Ilene to the palliative care team, Ilene didn’t know about the medical specialty. She had no idea how important it would be over the many years of her cancer journey, which included several recurrences. But ever-the-educator and problem solver, she went to the first appointment hoping for help to address many sources of discomfort. This is Ilene’s palliative care story.
April grew up with hairdressers in her family. As a kid she put curlers in her cat’s fur to practice. She eventually realized her dream and even took ownership of her own salon. In June 2018, a diagnosis of stage 3 breast cancer followed by 16 rounds of chemotherapy, a mastectomy, and 30 rounds of radiation, forced April to have to stop working. This is a story about fighting to get back to the people and things you love. This is a story about embracing help. This is April’s Palliative Care Story.
While living her everyday life and enjoying a concert, Rae Anne discovered a lump on the side of her neck. Not knowing what it could be, as she felt okay, she left quickly to schedule appointments with various doctors. Within a few weeks, the lump grew and she was diagnosed with stage 4 head and neck cancer. Rae Anne received several rounds of chemotherapy and radiation therapy, and was sent home to wait to see if the treatment worked. During this time, the palliative care team called which changed her life for the better, answering questions and providing monitoring during an otherwise lonely and scary time. “Palliative care was the most valuable part of treatment because it enabled me to feel like I was going to feel better again. There was an opportunity and a team of caregivers that were going to make sure that my next step in my cancer journey was smooth.” Rae Anne is now living cancer-free with her twin children, and running her nonprofit. This is Rae Anne's story. Narrated by Nick Ciavatta Produced by Melissa Baron, Lisa Morgan, and Nick Ciavatta
When Dan and Meghan’s 5-year old son Ryan was born with a rare genetic disorder that causes severe developmental delays—they didn’t know where to turn. Seizures, surgeries, and sleepless nights due to respiratory issues required constant hospital stays in the first six months of Ryan’s life, which took a toll on the young parents. “I spent so much time on the phone dealing with insurance companies and coordinating doctor’s appointments that I wasn’t able to spend quality time with my newborn,” says Meghan. With their hospital over an hour away and with Ryan requiring large, heavy equipment to help with the respiratory issues, Meghan and Dan began searching for extra support as they continued to see multiple specialists. Social media research led them to a specialty that helps children and their families deal with all aspects of a serious illness. This is Ryan’s palliative care story. Hosted by Dan Altano
When Sarah was diagnosed with metastatic colon cancer at age 34, she was immediately determined to find the best care possible. She fought for an oncologist who would support her at every turn, and sought out specialists from many different disciplines to provide her better care. She found her own pharmacist to organize her medications, pain specialists and physical therapists to help her with painful symptoms and side effects of treatment, and other doctors to round out her care team. She was willing to do anything to remain active and play a pivotal role in the growth of her two young sons. “I think any serious illness is going to make a patient assess their life, their values, and their purpose,” says Sarah. “Patients deserve the highest level of care available and I wasn’t going to settle.” One day while chatting with a friend, Sarah was talking about the makeshift care team she assembled to give her an extra layer of support as she treated her cancer when her friend interrupted her. “That sounds a lot like palliative care,” the friend said. This is Sarah’s story. Hosted by Dan Altano
A Quality Life: Rock Man Willie’s Rectal Cancer Story At an infusion clinic in Dayton, Ohio—which provides chemotherapy treatment to cancer patients—there’s a man known by all as “Rock Man Willie.” When he’s there, Willie stops at each infusion station to chat with people who could use a good distraction. With him are an array of small hand-painted rocks he’s designed himself which he hands out to cheer up those facing cancer. In return for these support rocks, Willie only asks for one thing from each recipient: a smile. Bringing a smile to others is Rock Man Willie’s mission. But his journey to finding his own happiness has been fraught with ups and downs. In 2014, when he was 41-years-old, Willie was diagnosed with Stage IV Rectal Adenocarcinoma. The severe pain caused by the illness as well as symptoms from cancer treatment left him frustrated and debilitated. A four-year uphill climb led his oncologist to refer him to medical specialists who could help him regain his quality of life while continuing to fight the cancer. This is Rock Man Willie’s palliative care story. Hosted by Dan Altano
In this episode, we tell the story of JoAnn, a woman in her early 60s who turned to palliative care for help in making informed treatment decisions and managing the symptoms of non-Hodgkin's lymphoma. Today, JoAnn is enjoying time with her toddler grandchildren. She still sees the palliative care team and credits them with restoring her quality life. Dan Altano
There is overwhelming research showing that listening to music can provide emotional and behavioral benefits for people with Alzheimer's disease and other types of Dementia. Our podcast guest on this special episode say that the key to helping patients through these methods is in the personalized approach. In this podcast, Host Dan Altano sits down with Dan Cohen of a program called Music and Memory which provides patients in nursing homes as well as in their houses with iPods and other electronic playing devices. The program also offers training to caregivers to create customized playlists for their loved ones. Meredith Wong of a partner program called CaringKind also joins to share real stories of Music and Memory in action and how it's making a true difference in the world of dementia care. Hosted by Dan Altano
On good days, you can find Paul of the Washington, DC area in his house, intently focused on one of his woodworking projects. It’s hard work, but it’s a labor of love. “I’m not the type to sit still. I’m at my happiest when I’m working with my hands and creating something new,” says Paul. The fact that Paul is able to get up and work on his hobby is something even he couldn’t have imagined five years ago when he was diagnosed with Ewing Sarcoma—a rare cancerous tumor that grows in the bones or in the tissue around the bones. A tumor in his spine caused immense pain to his back, and symptoms from chemotherapy, radiation, and several spinal surgeries left him unable to do even the smallest task. That’s when he was referred to palliative care. Hosted by Dan Altano
Since she was 12 years old, Kelly has dealt with an array of medical issues including Mitochondrial Disease, a clot in her lung and main vein to the heart, and Autonomic Neuropathy. These issues caused additional heart and bladder problems, as well as Gastroparesis which affects the normal movement of muscles in the stomach. Kelly had done her best to deal with all the chronic pain for nearly half her life but soon she could no longer work and even the smallest task became an issue. That's when she asked for palliative care. This is her story. Hosted by Dan Altano
In this special-edition podcast, Diane E. Meier, MD, of the Center to Advance Palliative Care, and Mary Mittleman, DrPH, of NYU Langone Health, discuss why making a dementia diagnosis is important for successfully managing other health conditions, and the many care elements that can make a difference for patients and caregivers. Meier and Mittleman acknowledge the difficulty for making the diagnosis, given treatment options, and offer ideas for integrating better dementia care, from physicians doing memory scans to look for memory loss that is impacting daily function, to being supported with access to the right staff for counseling family members and patients, and other psychosocial interventions. For background on Dr. Mittleman, she and her team provide support for family caregivers through NYU’s New York State-backed Alzheimer’s Disease & Related Dementias Family Support Program. Focusing on the psychosocial, the team provides interventions via support, education, and referrals which make a difference, and improves quality of life for the family, and those with dementia. A popular result of the program is the chorus, ‘The Unforgettables‘, composed of those living with dementia, and their family members; its members have been performing concerts in New York since 2011.
Lupus is a chronic autoimmune disease that can cause damage to skin, joints and organs. After seeing their eldest daughter Danielle deal with prolonged chronic pain, Darryl and Andrea Gladden were determined to ensure that their other two daughters were able to enjoy quality of life. That’s when they found palliative care. This episode of the quality life podcast, the Gladden family discusses how their youngest daughter, Deadra, came to find palliative care and how it helped her get back to her old self while dealing with lupus. The podcast also explores how it helped her family members as well. Hosted by Dan Altano
For many years, Beth, 55, of Baltimore couldn’t shake the nickname her sister and friends gave her. “They called me Balloon Hand Beth because whenever someone needed something, my hand would float up to volunteer,” says Beth. Beth has always been very active and willing to pitch in. In her professional life, she has worked tirelessly to improve her city’s environment one planted tree at a time as the Director of the Office of Sustainability in Baltimore. Most days, if she’s not helping out a relative or preparing to host a family holiday party, she can be found in her garden, meticulously growing her own food. “In the garden, things don’t stay the same. Sometimes a flower doesn’t come back or you have to move things around to make it right. It’s just like life. You have to adjust to your new normal,” says Beth. Beth has had to use this same philosophy when she was diagnosed with a rare form of stage IV appendix cancer. After multiple surgeries and chemotherapy regimens left her weak and unable to do the things she loved, for the first time in her life, Balloon Hand Beth was the one who had to ask for help. This is her palliative care story. Hosted by Dan Altano