D’ AGOSTINO’ S TIPS ON BEING AGOOD SELF-ADVOCATE
health
How to be your own best
ADVOCATE
Breast cancer patient and activist Chiara D’ Agostino shares hard-won advice that can save lives
Breast Cancer Awareness Month has special meaning for everyone who’ s had or lives with the disease.
But to Montclair resident Chiara D’ Agostino, this time of year has special resonance: It was four years ago, in October, on the eve of her 43rd birthday, that she was dressing up to go out and celebrate with her then-boyfriend, and felt a hard lump inher left breast. Only two months earlier, she’ d returned from atrip to Italy and had aroutine mammogram that had revealed nothing.
“ My first thought was‘ Why me?’” she says.“ But my second thought was‘ Why not me? Why would Ibe special and not get cancer?’”
Before her discovery, D’ Agostino had been aNew Jersey high school teacher, with amaster’ s degree in Italian culture from Middlebury College, who loved to travel. Since then, she’ s spent much of her time navigating aconfusing landscape of medical options and insurance obstacles, blogging about her victories and setbacks at beautythroughthebeast. com, and advocating for women who have
WRITTEN BY CINDY SCHWEICH HANDLER
been diagnosed with the disease. She has shared her experiences with Sen. Cory Booker, and delivered aspeech at aHealth and Human Services conference entitled“ The Affordable Care Act Saved My Life.” She shares her story, and what she’ s learned on the continuous road to wellness, with Montclair Magazine.
ATOUGH DIAGNOSIS
D’ Agostino was in between jobs when she discovered the lump in her breast on a Friday night, but she’ d started receiving health care coverage through the publicly-funded New Jersey Family Care program. Monday morning, she called her health insurer and found an oncologist at Mountainside Hospital who ordered another mammogram. But because she had dense breast tissue, that one didn’ t pick up the cancer, either. Her doctor gave her an ultrasound exam that picked up the 3-centimeter mass. A biopsy revealed that— despite having gotten a yearly mammogram, and with no family history of breast cancer— she had stage 3 triple negative breast cancer, a notoriously challenging variation to treat.
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D’ AGOSTINO’ S TIPS ON BEING AGOOD SELF-ADVOCATE
• Connect at conferences.“ I recommend Living Beyond Breast Cancer, which holds conferences in Philadelphia,” she says.“ They help you find clinical trials and connect you to other organizations.”
• Cultivate community.“ I eventually made some very close friends through this that have loved me unconditionally, and that’ s the greatest gift of all. The Renaissance Church in Summit has kept me going. Some of their members carried me when I lost hope and the will to live. Also, being with children keeps me going. I love the innocence of little people, and Iget to spend time with them every Sunday when I volunteer in the nursery at church.”
• Don’ t be shy about asking for antidepressant and anti-anxiety prescriptions from a psychiatrist, aswell as individual therapy sessions to deal with post-traumatic stress disorder.
• Don’ t go to appointments by yourself.“ I recommend having your own notebook and pen, and a second notebook that you hand to the person who drives you, so that person can take notes,” she says.“ Then you keep that notebook. When you’ re at the doctor’ s, things go over your head, and you don’ t remember to write them down.”
• Keep copies of everything.“ Especially if you’ re going to lots of different doctors and locations, keep all your medical records,” D’ Agostino advises.“ Write down dates when you did things. You think‘ I won’ t need to know this,’ but you don’ t know. Ihave every disc, scan and blood result. It makes it so much easier.”
• Keep your doctors updated.“ Get a fax machine, and pay $ 10 amonth for a fax number,” she says.“ Then scan and fax your results to them.”
• If you know you’ regoing to be seeing other doctors, develop relationships with them.“ That way, if you need asecond opinion or want to switch to them, they’ ll already have your records,” says D’ Agostino.“ Otherwise, it takes about a month to get on their books.”
COURTESY OF KELLY CLARK
40 FALL 2018 MONTCLAIR MAGAZINE