Podcasts

Living Well with Serious Illness: Palliative Care Improves Quality of Life with Ovarian Cancer

May 18, 2020

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.  … Read More

Living Well with Serious Illness: Rae Anne’s Story

February 6, 2020

Rae Anne was at a concert with friends when she found a lump on the side her neck. Worried, she left and scheduled various doctor appointments to figure out what it could be, as she didn’t have any other symptoms. Over the course of a few weeks, the lump grew, and she was diagnosed with stage 4 head and neck cancer.

After several rounds of chemotherapy and 35 radiation treatments, Rae Anne was told by her oncology team that she needed to wait at home for 3 months until her next scan, in order to see if the treatment worked. While living with anxiety and side effects from treatment, Rae Anne received a phone call from the palliative care team at the hospital where she received treatment, to schedule an appointment. She had never heard of palliative care and didn’t know what to expect.  … Read More

Living Well with Serious Illness: Ryan’s Pediatric Palliative Care Story

January 13, 2020

 

When Dan and Meghan’s five-year-old son Ryan was born with a rare genetic disorder that causes severe developmental delays and many other complications—they didn’t know where to turn. Seizures, surgeries, and sleepless nights due to respiratory issues that required frequent hospital stays in the first six months of Ryan’s life 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. 

As the number of symptoms and medical issues increased, along with traveling long distance to get to the closest hospital, Meghan and Dan began searching for extra support. 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.  … Read More

Living Well with Serious Illness: A Young Mother’s Colon Cancer Story

November 4, 2019

 

When Sarah, a mother of two young boys, was diagnosed with metastatic colon cancer at age 34, she was shocked and overwhelmed, but also determined to find the best care possible. She fought for a cancer doctor who would support her at every turn, and found specialists to address the many consequences of treatment she experienced. She enlisted her own pharmacist to help her understand and adjust the numerous medicines to minimize side effects. She found a pain specialist and physical therapist to help with difficult 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 be able to care for her 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. Not for me and not for my children.”  

One day, she was telling a friend about the hand-selected care team she assembled to give her an extra layer of support through the cancer journey.  

“That sounds a lot like palliative care,” the friend said.  This is Sarah’s story.  … Read More

A Quality Life: “Rock Man” Willie’s Cancer Story

September 30, 2019

 

At a 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 station to chat with people who could use a good distraction. He carries with him small hand-painted rocks he’s designed, and he hands them out to cheer up others who, like himself, are facing cancer and other serious illnesses. In return for these support rocks, Willie only asks for one thing: a smile. … Read More

Living Well with Serious Illness: JoAnn’s Non-Hodgkin’s Lymphoma Story

September 4, 2019

“I wish I could have videotaped JoAnn in her first palliative care session so that she could look back and see how far she has come,” says Mark Curtis, an advanced practice registered nurse and palliative care specialist. Mark has been helping JoAnn—a woman in her sixties—deal with the symptoms and stress of non-Hodgkin’s lymphoma since 2016. Today, JoAnn is well enough to help care for her grandchildren and take part in charity walks, but when she first arrived to meet with Mark, these goals seemed unobtainable. 

This is JoAnn’s palliative care story.  … Read More

How Music Can Help People Living with Alzheimer’s Disease and Other Dementias

July 11, 2019

If you care for a loved one living with Alzheimer’s disease or another form of dementia, and are looking for ways to help them cope with loss in memory and brain function, you’ll want to know about a program called Music & Memory.  … Read More

A Quality Life: Paul’s Ewing Sarcoma and Palliative Care Story

May 19, 2019

On good days, you can find Paul 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 do woodwork 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 back pain, made worse by symptoms from chemotherapy, radiation, and several spinal surgeries. He couldn’t do even the smallest of tasks.

That’s when he was referred to palliative care. … Read More

A Quality Life: Marion’s Breast Cancer and Palliative Care Story

April 9, 2019

For Marion, breast cancer and its treatment brought pain and depression that kept her from the things she loved doing. She was diagnosed with stage IV breast cancer in 2014. Eventually, Marion’s oncologist referred her to palliative care.

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

“Since I began seeing palliative care, I am much more aware of living purposefully, of spending my time doing things that mean something,” says Marion.  … Read More

Treating Chronic Pain: Kelly’s Palliative Care Story

March 10, 2019

When Kelly—a central New Jersey woman in her early 30s—is asked what brings her joy, she doesn’t have to think very hard.

“It’s definitely being with my young son. He’s my world. His smile lights up my life,” says Kelly.

Since she was 12 years old, Kelly has faced an array of medical issues. Over the years, she has dealt with lupus, mitochondrial disease, a clot in her lung and main vein to the heart, and autonomic neuropathy. These issues have caused additional heart and bladder problems, as well as gastropareses, which affects the normal movement of muscles in the stomach. Kelly had done her best to deal with the chronic pain for nearly half her life, but in 2016, the issues became unbearable, and even the smallest task became an issue. … Read More