Tag Archives: advocate

Elizabeth Aquino: Who Am I Without All of This?

October 17, 2017Podcastadvocate, caregiver, caregiving, creativity, disability, disability advocate, extreme parenting, fragmentation, identity, meaning, mother, mothering, parenting, pastry chef, purpose, rights, value, writerDianeMcDaniel

Elizabeth Aquino is writer, disability advocate, and pastry chef. Elizabeth talks about the struggle to understand her own identity as separate from that of her now 22-year-old daughter, Sophie, who is profoundly disabled, as well as how the style in which she writes reflects this fragmentation of identity. Elizabeth also talks about the importance of creativity, what it means to give care to someone until one of you dies, and the questions that this caregiving raises about the value of a life and what it means to be human.

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Jodi Newson: Nurturing Bonds of Caring and Support

August 22, 2017Podcastaccountant, advocacy, advocate, cancer, care, chemotherapy, dietitian, evidence-based, family, food, nutrition, nutritionist, oncology nutrition, radiation, team, ulcerative colitisDianeMcDaniel

Jodi Newson is a registered dietitian in oncology nutrition who works with cancer patients. Jodi talks about the central role that food plays in maintaining our social bonds and how side effects of cancer treatment can disrupt our most cherished ways of showing care. She also talks about being drawn to meaningful work in which she has a positive impact in the lives of her patients and their families and explains how her role often extends beyond nutrition. Jodi also reflects on how she has personally benefitted from the life lessons she has learned while helping others.

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Cecily Young: Conscripted into Service as a Caregiver

July 11, 2017Podcastadvocate, architect, architecture, bone marrow transplant, cancer, caregiving, chemotherapy, conflict, diabetes, diagnosis, husband, iPhone, leukemia, Master and Commander, morale, mother, mother-in-law, Patrick O'Brien, Polycythemia vera, professional sacrifice, rant, resentment, responsibility, son, womenDianeMcDaniel

Cecily Young’s husband, John Ruble, underwent a bone marrow transplant as treatment for leukemia in 2005. Cecily talks about providing for her husband’s wellbeing, as well as that of their young son, during his treatment and recovery. Using the metaphor of herself as a ship’s captain, she envisioned herself as charged with maintaining morale and keeping the everyday concerns of their lives afloat. Cecily also delves into the devastating conflict she experienced with her sister while caring for their mother, as well as the feelings of resentment engendered by the significant professional sacrifices she made as a result of being persistently pressed into service as a reluctant caregiver.

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Evan Handler: Surviving Cancer and Living With Trauma

May 2, 2017Podcastactor, acute myeloid leukemia, advocacy, advocate, anger, author, bone marrow transplant, Broadway, Californication, cancer, Evan Handler, Neil Simon, New England Journal of Medicine, patient care, recurrence, Sex and the City, survivorship, television, theatre, traumaDianeMcDaniel

Today, I speak with Evan Handler, actor, author, and advocate for cancer patient care. Best known for his roles in Sex and the City and Californification, Evan was diagnosed with and underwent treatment for acute myeloid leukemia (AML) in 1985, when he was 24 years old. After a two-year remission, Evan had a cancer recurrence. He received a bone marrow transplant in 1988, which he credits for saving his life. Evan wrote about his experience in the book, Time on Fire: My Comedy of Terrors, which originated, in more condensed form, as an off-Broadway one-man show.

In this episode we talk about Evan’s encounter with cancer, which has with faded with time but remains the defining event of his life. Evan shares what he learned from his own experience of navigating a bewildering, often inaccessible world of medical information as well as a medical system and procedures that seemed centered on priorities other than patient care. He also talks about his motivation for undergoing harsh treatment for cancer when his odds of survival were very low.

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