A year ago today, I brought a cake to the hospital so my friend Chiara D’Agostino could celebrate her 48th birthday during her chemo appointment. Chiara died this August 4 of a complication of stage 4 triple negative metastatic breast cancer — leptomeningeal disease, in which the cancer invades the fluid around the brain and spinal cord. I wasn’t ready to write a tribute to her immediately after her death, but today is perfect, because we used to laugh over the fact that I had no excuse for forgetting her birthday was Oct. 25, 1971.
Oct. 25, 2019. Click for original post.
As anyone who has spent a lot of time in hospitals knows, staffers are constantly requesting that patients confirm their names and birthdate. If 10 nurses/residents/doctors happen to encounter you during, say, an eight-hour emergency-room visit, you’ll be asked for your identifying information at least 10 times. Yes, you’re wearing an ID wristband, but the conversation is still mandatory. This probably sounds like it shouldn’t be a big deal, but introducing yourself multiple times to strangers you never see again — so they don’t make a mistake and get sued by your next of kin — becomes annoying when you’re at the hospital exhausted, vomiting, attached to an IV, and surrounded by beeping monitors. Also, this is the third hospital visit in a week and your pain is so bad that even methadone only eases it a little. See how much you like repeating basic facts about yourself then! But the worst interaction was always when some poor surgical nurse from outside Chiara’s regular team — charged with trying to get a summary of Chiara’s vast medical history prior to a procedure — would ask, “So which side is the breast cancer on?” We’d scream, “IT’S EVERYWHERE!” I mean, that’s literally the definition of stage 4 metastatic cancer.
Another thing that was unforgettable about Chiara’s birthday: It was on her 43rd, in 2014, that she first felt a golf-ball size lump in her left breast, just two months after a normal mammogram and physical exam and despite the fact that she had no genetic risk. That was a Saturday. That Monday, she went to a doctor’s appointment, and also started a blog that she called Beauty Through the Beast. A week later, she received a diagnosis of stage 3 triple negative breast cancer. (Triple negative cancer means the cancer growth isn’t fueled by the hormones estrogen and progesterone or by the HER2 protein, so the disease isn’t responsive to treatments that target those receptors.) Chiara blogged through chemo, the mastectomy of the cancerous breast, the prophylactic mastectomy of her right breast, and the preparation for reconstruction surgery. After 2016 — after her cancer advanced and multiple reconstruction surgeries failed — she continued sharing her journey on her Beauty Through the Beast Instagram account and her Facebook page.
“I’m a social person, I feed off of others,” Chiara wrote in a Nov. 4, 2014, post titled “Call Me!” She had posted her diagnosis on Facebook and “discovered not everyone reacts to illness the same, therefore I clearly and specifically ask for what I want: I posted on social media that I welcome contact, and received just that.” Clearly and specifically asking for what she wanted — and showing you what was happening! — was Chiara’s forte, and it was the reason I met her in real life on June 30, 2019. Before that, I just followed her on Instagram because of her glorious post-chemo gray hair and physical boldness.
Anyway, in summer 2019, Chiara had Gamma knife surgery (a confusing name for highly directed radiation) for tumors that had popped up in her brain. In the immediate aftermath, she took to Instagram in real distress, asking for company and support. I couldn’t easily get to her in Montclair, N.J., where she lived — luckily, a couple of other followers were able to — but I said I would meet her at her next chemo appointment in Manhattan. I got there as scheduled, but the chemo didn’t. The doctors didn’t like her blood work; there was trouble with her liver. Chemo was cancelled and we spent all day sitting in the oncologist’s waiting room as the oncology team tried to arrange a hospital bed so her liver could get checked out. When no empty bed could be found, the doctors agreed she could go home as long as she would come back immediately, no matter what time it was, if she was called with news a bed had opened up. She got the call at night when MrB and I were supposed to go to dinner with friends from out of town. I was told him, “Just go yourself and tell them that I have to go to the hospital to help a stranger check in for liver surgery.” You know, my usual story!
Chiara and I spent a lot of quality time together after that. Much of it was at the hospital …
… but we also got to have lunch in NYC a couple of times; hung out at her place and watched shows and played with her cats; hung out out my place and played with my dog and cats; and even got to a Michael Franti concert in New Jersey.
Chiara was a great advocate for herself as a patient, traveling to breast cancer conferences around the country so she could be up on the latest treatments and clinical trials. She was also an avid model, and was interviewed and photographed by publications including the Oprah magazine and Allure about “going flat” after numerous implant infections made her give up on breast reconstruction.
Click for the Allure magazine story and photos.
She told me, “I’ll take my clothes off anytime, anywhere!” and she meant it. She loved being seen.
Two weeks before Chiara died — while she was in hospice care at her sister Mary’s house — I realized I wasn’t going to get to speak to her or visit with her again. As the brain disease had advanced, she stopped talking and was sleeping much of the day. But her family was reading her messages to her, so I asked Mary to read her this:
I found you on Instagram due to your fierce, beautiful modeling photos. Your grey hair and red lips jumped out at me!
I always said we needed to make t-shirts with your photos on them. Mark the photographer has sent me the files and I’m ordering the shirts now. I’m going to wear your picture to protests and other places where I know there will be photographers … I guarantee they will want to take pictures of your picture. As long as I’m around, you will continue to be seen.
I took me longer than I hoped, but I got it done and delivered most of the t-shirts to Mary today.
Tomorrow, like I promised, I’ll be wearing Chiara’s picture at a protest on the steps of the Supreme Court building in Washington D.C. … accessorized by one of the huge feather earrings that Chiara got when she lost her hair again due to chemo in 2017.
When Mary asked me if I wanted anything of Chiara’s, the feathers came to my mind immediately.
She had one for every day of the week, and now I don’t feel like myself if I’m not wearing a Chiara feather.
As a jewelry designer for 15 years, I studiously avoided wearing any jewelry that wasn’t from my own line — but leave it to Chiara to be an exception to every rule!
Read more about Chiara:
- Beauty Through the Beast blog
- Beauty Through the Beast Facebook page
- Beauty Through the Beast Instagram account
- Allure magazine, 2019
- Oprah magazine, 2017
- Not Putting on a Shirt, 2020
- Wall Street Journal story, July 2015
- Donations in her memory can be made to Metavivor, Share Cancer Support, or Wynona’s House.
Chiara D’Agostino
10/25/71 – 8/4/20
Oh, W, this is a beautiful obituary – and you really do them like nobody else. And that you honour your friends in this way is a credit to your loyal nature. Thank you for posting this.
Thank you for reading xoxo