Chiara D'Agostino
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Montclair resident Chiara D’Agostino holds a master’s degree and has metastatic breast cancer. She cares for a parent with dementia.
ANNOTATIONS
Learn More [1]: “Policy Basics: The Earned Income Tax Credit.” Center on Budget and Policy Priorities, March 4, 2020.
Learn More [2]: “Policy Basics: State Earned Income Tax Credits.” Center on Budget and Policy Priorities, August 19, 2020.
Learn More [3]: “Expanding EITC Could Help Over 1 Million New Jersey Families.” New Jersey Policy Perspective, October 10, 2020.
Learn More [1]: State of New Jersey.
Learn More [2]: “Snap Basics.” Center on Budget and Policy Priorities.
TRANSCRIPT
Interview conducted by Debbie Galant
Montclair, New Jersey
August 17th, 2018
Transcription by Debbie Galant
Okay?
Okay.
Um. This is Debbie Galant. I am interviewing Chiara D’Agostino in Montclair, New Jersey on August 17th, 2018. So uh, Chiara, start out by saying your name and spelling it.
Sure. Chiara D’Agostino. It’s spelled C-h-i-a-r-a, D-’-A-g-o-s-t-i-n-o.
Great. Um, tell me when and where you were born.
I was born October 25th, 1971. Uh, in this house that we’re sitting in-- well, I wasn’t actually born in the house, but I was born in Montclair, New Jersey at the hospital down the street.
Okay, and, um, tell me a little bit about your childhood. What was, um, what was it like? What was it like growing up here?
Truly? Okay, so, living in Montclair was fun [clears throat]. There were, I had some neighbors that I used to play with all the time. I just felt like I was always out playing with, in my backyard with worms or like, stray kittens [laughs] and. Um. We had a clubhouse downstairs, I mean, it was just, you know, playing outside before all this technology happened. Um. And in the summertimes my family would take me to visit their family in Italy-- my parents are both born in a small town called Lacedonia in the province of Avellino in the south near Naples in Italy. So I was lucky enough, I think, from the age of four, about every other summer, um, my mom and I or my mom and dad and I would go to Lacedonia. And I have wonderful memories of that. Um. I know that a lot of friends would maybe go to camp in the summer and my camp was Italy. So I have fond memories of my grandmother whose also name is Chiara. Um, watching them making pasta by hand. Um. My grandmother would kill the chicken or the rabbit in the backyard [laughs] that she had and cook it for us for lunch sometimes. That was devastating to me. Um. But I just really enjoyed experiencing a different kind of lifestyle. I learned all about a different culture, I learned Italian, I became very close with my Italian cousins and I started having penpals from Italy and um. I really, really enjoyed that.
Tell me about what your parents did for a living and what uh, feelings you had about how rich, poor, or, i-if you have any feelings about those kinds of things at all.
My mom, uh, was a seamstress at home so she went to school in Italy. I think she only had like a middle school education. Uh. She had to stop going to school so that she could support and help her family and uh, so she worked in a factory for a while. But then when I was born, mhm, um, she was in her forties and she stopped working and stayed home and took clients at home. And my dad was a factory worker. He started out as a cobbler when he came to America in his, I guess, his very early twenties. And he ended up working as a machine, as a machinist in a factory in Bellville. Um. I was aware that I lived on the other side of the tracks in Montclair. Um, I started recognizing that because when people started making fun of my clothes, they didn’t match, even, even people that I share blood with would make fun of the clothes that I wear, the colors or that they were hand me downs from neighbors. Um. I was uh, asked if I was a boy or a girl because my haircut [laughs] didn’t reflect I guess what they thought would, and so I kept begging to get my ears pierced. Um. But. You know, my dad worked a lot. Um. And my mom worked a lot and um, they were stressed. And we, you know, we didn’t have, I felt like we didn’t have a lot of money, you know? I felt like we had a home but I lived in an apartment. Most people lived in full houses in town. Um.
Explain how that works cause we’re in a house, it’s a multi-family house.
Mm-hmm.
So, um, how did it work in terms of h-- you know, you live in an apartment but it was in this house.
Yeah, so this house, my parents bought this house, um, I think a few years after they came to America and then they converted it into a four-family house. So there was a, you know, four apartments and I grew up on the second floor with my mom and dad and it’s a three bedroom apartment. At the time it was a two bedroom and she had her sewing place in one room. Ah-- so, yeah.
And then there were renters?
Renters in the other apartments. Actually, my grandmother, my father’s mother, lived downstairs for, in one of the apartments for a while. And then my mother’s brother lived in this apartment that we’re in right now for a while. Um. Now my mom lives s-s-still lives in the second floor and my nephew lives in the attic. So.
So over the course of your life this house has seen a lot of people and, and you know, used in a lot of different ways.
Mm-hmm.
Um… Did you feel like there were-- you had everything you needed or wanted, or were there things that you needed or wanted that you couldn’t have?
Needed or wanted emotionally or physically? [laughs].
Both.
Um… I would say yes, I absolutely felt like there were things um.. That I wanted, ah, that I didn’t have. I mean, I eventually had my own room. [laughs] When I was fifteen. Um. You know, I think I got a record player and a VCR. You know, that was like really really big and like, a little TV in my room was like a really really big deal then. But you know. No, I mean I couldn’t go clothes shopping whenever I wanted to or anything so I started working when I was fourteen. Um. At the mall and then at the corner luncheonette. And babysitting when I was eleven to start making my own money so that I didn’t have to ask my dad because he didn’t like to say yes [laughs]. Um. And. I’m sorry, I feel like-- Oh! And then emotionally um… You know, I feel like my parents worked a lot and I mean I can say that now because I’m older and I can look back at it. But when I was young, I remember being told to shut up and get out of the way a lot. Um. So I, I grew up feeling like I didn’t have a voice, ah, like I didn’t matter, I, I didn’t feel comforted. I felt fearful of my father most of the time. Um. I had a lot of anger and resentment ah… and I was sad [clears throat]. We weren’t told that we loved each other, I mean, we didn’t express that. Um. I didn’t feel like I got much… You know, guidance, except for you know, don’t do that and if you don’t listen to me I’m going to hit you. Um. Yeah. Except for when I went to Italy, I felt more joy from the family that I was with there.
Do you think that had anything to do with the um, the economic structure or the social structure of Italy? Do you think the people, the relatives put less pressure on them?
Um… Probably. Maybe. I think so. I, I mean, definitely that seems to be a big difference between the two lifestyles. Um. One of my friends in Europe said that Americans uh… Tend to take pride in how busy they are. [laughs] And I was like oh wow! That’s a good way of saying that. And she’s just like, “If you were in Europe and you needed help, we would just come over with a big bottle of wine and we would all just be there!” You know? Um. Which does make sense. Because I’ve experienced that in, in Italy. Ah.. So I think my father definitely had a lot of pressure. He owned a couple of properties that he either rented out or… Ah… I don’t think he had many people to talk to. He had a difficult upbringing. He had to kind of support his parents that were living in his house too so. Um. You know, as an adult I can look back and say, “Wow, he had a lot going on,” and he didn’t have anyone comforting him either and it must have been really lonely. And hard. Um…
Who did you share a room with?
Mo-my mother. I shared a room with my mom until I was fifteen. My parents, uh, had separate bedrooms. I mean, I mean I remember sleeping the same bed with my mom and my dad up until a certain point. Um. Like maybe, I don’t know, maybe the bed got too big or I, I’ve been told I snore and my mom snores and I think my dad is an insomniac [laughs]. So I think that’s what happened. And then when I got my first boyfriend in high school. Um. We would talk on the phone until late at night and I’d be like alright my mom wants to go to bed, you know, I think I need-- he was like, What do you mean? What does that have to do with anything? You share a bedroom with your mom? And I was like yeah! And then, you know, when I learned that it was, I guess, something not acceptable in America, um. I asked to have my own bedroom.
Do you have siblings?
I do. I have a brother and a sister.
And were they living at home at the same time?
Ah, my sis-- I don’t recall living in the same home my sister because she’s twenty years older than me and my brother is nineteen years older than me and he was going to Montclair State University-- am I not supposed to say where I’m from?
No.
Okay. [laughs] He was going to Montclair State University while I was living here and maybe even law school. Yeah, he was going to law school, too. So he lived here until I was about seven, was when he got married.
Um. That brings up the question about expectations and higher education. So tell me about that brother going to college and law school and what the expectations were in your family. Um, I take it your parents didn’t have higher education.
No, they did not.
So what were the expectations and thoughts in the family about that.
I was…. I was not uh, told that I needed to go to college. I don’t even think I was, you know, um, encouraged. It was uh, I think, I mean it was twenty years ago! But it wasn’t like, “You need to go to college, what are you going to do?” I think it was more my sister who brought up the conversation and um… Yeah, so I, I looked for colleges and my dad gave me a budget and um. It didn’t fit the college I wanted to go to-- I wanted to go to Ithaca and become a physical therapist and instead I went to SUNY New Paltz and have a degree in dance and choreography.
[Cat meows]
[Laughs] So how did that come about, that, you know, dance and choreography, New Paltz, how did, how did that, you know, how did you switch from one idea to the other?
That’s Sophia meowing over there.
Mm-hmm.
Well, so uh, growing up in Italy, what brings me joy is dancing. And they would always have these dances, like, partner dancing, and my uncle was a musician so he would sometimes play at the festivals and my friends and I would do these partner dances. And when I was finally able to go away from home and go to college, I was finally able to take these dance classes that my parents could not afford. I wanted to learn, you know, the violin [laughs] and I wanted to dance and do art and they, you know, they wouldn’t spend the money on it. So ah. I thought uh, now’s my chance to do what I want to do. So I took as many dance classes as possible and I took ah, anatomy and kinesiology and like, nutrition and, EMT. I became an EMT. So still very interested in how the body works. Um. So I wasn’t able to become a physical therapist but I still was able to learn about the body, but unfortunately I came out with a dance degree with only four years of dancing. So I didn’t feel confident to really become a professional dancer or teach or any other thing like that. Um.
How, how did you pay for college?
My parents paid for my college.
What did you think you would do, um, while you were in college? What were your plans if any, if you thought further about what you would do when you graduated?
I wanted to become a teacher, actually, so I did have a goal. [laughs] Um, but when I did my junior year abroad in Florence, Italy, I came back and they had changed the requirements to become a teacher. I would have had to stay an extra year. And I, ah, it wasn’t in the budget to have five years of college and I was upset about the switch as well so I came up with, you know, whatever I had the most credits with and came up with this dance and choreography major so that I can graduate in four years.
With the idea of becoming a teacher or?
Well, the idea of graduating! [laughs].
Okay.
The idea of having a bachelor’s degree. I just did not know what I would do with it. Um. So yeah. The advice from my sister really was just get your degree, get out of there, and when you decide later that you want to specialize in something you can always go back to school because people switch careers anyway.
So what did you do after college?
So, I didn’t-- I went to where I love, I went to Italy. And I had had, um, this boyfriend that I had had pretty much every summer, so in my mind it was our chance to be together. And he had a different idea [laughs]. He had a few women that he wanted to spend time with. Um. So I spent about four months there and… And I tried looking for a job. Um. Diligently. I was trying, I was, uh, going to the Consulate and trying to get working papers that I needed like, a health certificate to get working papers, but you needed working papers to get a health certificate [laughs]. It was like, you know, and so I ended up being like a nanny for somebody, and with my ego, I was like I just graduated from an American university! Like, I should be doing something besides nannying for somebody. And, and then I also got a job, like, busing tables at a Spanish restaurant in Trastevere, in a part of Rome, and I was like, I feel like I should be doing something else! So I came back and um, what did I do? I… started working at Mountainside Hospital in the Emergency Room and I volunteered on the ambulance unit. I also got a job working for a urologist as an assistant so I kind of like, tried pursuing the medical part.
What were you doing in the emergency room?
I was, um, what do they call it? The per-- the tech that kind of. Checks people in? And then sometimes, and, but again, I wanted to see things [laughs]. I wanted to have more experience. So sometimes I would be in the back room, uh, helping order tests or get results and giving them to the doctors and telling, I guess, you know. It was twenty years ago, I don’t remember the verbage, but, but I was in the middle of it all which was exciting.
Right, and were you living back home?
I was, yeah. I had moved back home after I came back from Italy. Um.
And you’re about, what, a mile from the hospital?
Two blocks.
Two blocks!
[Laughs].
Less than a mile from the hospital. Okay, so you lived at home rent free?
Rent free, yup. And I was working at the hospital per diem. Working regular hours at the urologist in, I think Summit. And then sleeping over sometimes in the ambulance unit volunteering just to get that experience.
Did you own a car?
I was given a car from my mom, like an old Ford Escort [laughs].
And um. And, what about health insurance in those days?
Good question. I think, I wonder if I was still young enough to be on my parent’s health insurance? And if not, I wonder if I was getting it… I do remember a therapist at some point saying “You need health benefits.” You know, she’s like, “You never know what could happen. You just need health benefits.” I know for a while I also was a nanny. Um, since I love children. And I was on like, Mountainside Hospital had a thing called Charity Care. You would apply saying if you make below a certain amount of money. So I was on that for a while.
So you’re at this point, about how old and what time period are we talking about? What years?
I think up until I was about… thirty, thirty-two or so. Maybe about thirty, um… I was, you, I did the jobs that I just explained and then I was nannying for different families and then also going to school at night to do some pre-med work. And… Oh God, what happened after that…?
Were you planning on becoming a doctor?
I was thinking of becoming a doctor. And then I was dating a doctor and working in the ER and realizing that they work a-- ot that I didn’t want to work a lot-- but I realized that I needed another ten years of school which to me seemed daunting since I didn’t have that much of a happy childhood? [laughs] Um. I think I, I wanted to start living my life. And also I, I noticed that the doctors complained a lot about how insurance companies were making decisions for them and how unhappy and frustrating that was. Um. Then a friend at some point sat down with me after I got divorced, I was married for a couple of years, um. I wanted to just be a house-- a house wife and a mom [laughs] was really what I wanted to do. And--
How old were you when you got married?
I think I was 30 or 32.
And um. And uh, how long were you married?
Just two years.
And, and what did your husband do?
He was an architect, and he, he was an um, a teacher at the University of Arizona. So we moved out to Tucson, Arizona together.
What was your lifestyle like then and how did you feel about it?
Um. [clears throat] Excuse me. At the point when we met, I had just come back from living in California so, um, one of my jobs, I worked at a wine importing company. I used my Italian skills and I met somebody, one of the wine representatives that lived in California, and he asked me to marry him. [laughs] So I had moved out there. And then our engagement broke up, and after a couple years I moved back into this apartment. And um, I met up with an o-- an old high school boyfriend who had also broken up with an engagement and I call it a “rebound marriage” because we got married very quickly and we drove out to Tucson and got married in like Novem-- we move-- I think we drove out in September and got married in November. Uh. And… [clears throat] Excuse me. [clears throat] I found it hard to be in Tucson because of the desert and because here in Montclair we’re just fourteen miles outside of Times Square and in my thirties when I was young, you know, and single, I would go to the city with my friends and go dancing in the clubs. Um. And here I was in Tucson in the middle of the dessert where I thought I would see people because it was warm and instead you don’t see people because it’s too hot. [Laughs] And my husband at the time was working a lot so I didn’t see him and I felt very lonely. And I also feel like I didn’t have a strong sense of self. [Clears throat] Yeah. So I was unhappy. Um. And he worked a lot and we bought a house. Uh. And, and then we knocked down the kitchen and tried, you know. Working that way. I felt very lonely. I was going to school for early childhood education. Uh. We did come back to Montclair, New Jersey and got married in church. Um. And then we went back there and our marriage basically started falling apart. And about a year and a half later, we got, you know, we got separated and eventually divorced and I moved back to Montclair [laughs] to this house.
So what did you do then? What was your plan?
So then I was devastated. Um. Devastated because I was like now what? I’m thirty-two, thirty-four, you know. Um. I don’t. How am I gonna have children and be a housewife when I’m single? Um. Honestly, I became a coke-head. I got addicted to cocaine and I was, I had already started drinking a lot when I was in California, and drinking more in Tucson when we got separated. So um. So I became, you know, that, became prevalent in my life. And after about a year of… you know, doing marijuana and… Xanax and alcohol and cocaine um… I finally looked at myself in the mirror and I was like, “I’m gonna be dead in the gutter soon if I don’t stop.” Um. So I consider that, like, God tapping me on the shoulder [laughs] . So I quit the coke, quit hanging out with the people that was buying the cocaine and the marijuana and stopped taking the Xanax and I started walking everywhere because I had all this energy and I wasn’t working. Um. I was seeing a therapist and she pointed out, you know, do you think you’d be acting this way, whatever I was explaining to her, if you hadn’t been drinking? And I was like oh.. Okay, there’s that now, too. So that’s when I started going to Alcoholics Anonymous meetings. And I’ve been going ever since and I’ll be [clears throat] sober ten years October 2018. Um. And, in my sobriety, so about… Let’s see… Mm, I dunno, mid-thirties at some point, after about a year of sobriety-- early sobriety-- I started substitute teaching at a Catholic school. Um, I became involved in the Italian-American community in New York City and I gave my resume to somebody and I got a call one day from uh, a, a nun from Most Sacred Heart of Jesus School and I was like, “No, I can’t give you any money.” And she’s like, “No, we want to see if you can substitute for us, we’re looking for an Italian teacher.” And so I went there and I was really happy to be in this really loving community. Um. It was there that I started teaching Italian. They asked me to get my teaching degree so I started going to school at night.
Um. And I got, it was from like here, one of the schools, um, in town… I forgot what the course is called when you go to school at night. Um. But I did that, and I got my teaching degree in Italian and then they asked me if I wanted to get my marriage annulled and I said, “Okay.” And then after about a year, they hired me full time, um, but I, it was everybody, every teacher’s dream to teach in a public school so after I got my teaching degree, I left there and went to a school in Scotch Plains which lasted just a few months. Ah, then I went to another Catholic school in Wayne-- that was high school.
What happened in Scotch Plains?
They uh, fired, they gave like, a lot of us pink slips? I had just filled in for maternity leave, so. Um. So then I found another-- and I was surprised to be able to find an Italian teaching job so easily and quickly, like, each position, each place had one to two Italian teachers. Um. So I taught at, uh… DePaul Catholic High School in Wayne in New Jersey. And then I left there to get a job in a public teaching school. So I went to Berkley Heights, Governor Livingston High School for about a year, year in a half. And then went to Allendale in Bergen County, their high schools. I just realized I loved teaching high school level. Ah, I love little children but teaching a group full of, a classroom full of twenty kids is, is a lot. Um. And then after Allendale, I real-- I mean I, while I was at Allendale I started applying for a masters program at Middlebury College which I thought I could never, ever get into or afford to be able to go to Vermont to do.
Um. But I applied and figured maybe I could figure it out. And, and I did. I got accepted and I got a little bit of a scholarship and this time I asked my dad for some money to go to school and he said no. Um. So I… did what most people do and got student loans. And um. Went to Middlebury College. Part of it was studying abroad in Florence, Italy. So I did two semesters in Vermont, two semesters in Florence, Italy and a summer in Oakland, California. That was their program. And graduated with my Masters degree in Italian Culture in August 2014.
How did that feel?
[Laughs].
How did that whole thing feel?
It felt really, it felt amazing. It felt like a major accomplishment. I don’t know why, maybe just because my brother and sister have their law degrees and so… My nieces and nephews have their degrees and it was never pushed on me. My mom actually said to me, “why are you wasting your time,” you know, “Why are you doing that? Why are you wasting your time? Why don’t you teach English or something that makes more sense?” She didn’t support me going [laughs] to get a degree in her culture. At all. For some reason, I think she just wanted me to stay home and, I don’t know, take care of her or meet somebody or, I, I don’t know what she wanted me to do. But um.
What did, what did you think you would do? What did you hope you would do at this point?
I hoped to come back with that Master’s degree, come back to the United States, and do something, get a job in Manhattan where I could use my advanced Italian speaking skills with adults, um... And I was dating, but I didn’t have any children and nothing tying me anywhere so. Um. I figured I could travel, hopefully. I was hoping to work for a company that would, that could use a liason. A bilingual liaison. Um. That works well with people [laughs] . I like networking and traveling. Um. So I was hoping to do that.
And then what happened?
What happened instead is [laughs], is, I graduated in August 2014 and right before I graduated, my family was calling me, telling me my father was coming in and out of the hospital with pneumonia. Um. And even in hospice. So when I came back, actually was supposed to stay in California. I wanted to stay in California, but I came back early to see my dad. He was…. He… I dunno, he had, what is that, when they put you in solitary confinement cause they thought he might have had something… Mono or… Something, ah, so I had to go in and put a mask on and everything to go see him and um. [Sighs] And then he was put into a hospice hospital and taken out of that bubble. And I just spent every day that I could with him. Ah. Every afternoon, um, for the past, those last three weeks. And um. We didn’t have a close, you know. [laughs] relationship. But. You know, he’s a person, and he’s my father and, um. I wanted to spend that time with him. So he passed away on Labor Day weekend. Um. And then um. [clears throat] And I didn’t get a job yet because again, I didn’t, I had started looking for jobs while I was at Middlebury, you know, Skype interviewing, but at the time they were also changing their books into, everything was going digital. And um. With teachers, a lot of times they don’t give you a lot of support so I’m like, asking what support they have for us teachers to go digitally. I don’t, I just wasn’t, I just knew I didn’t want to go back into teaching I didn’t think. So I was more focused on doing something in the city. But as I was kind of uh, mourning my father’s death and going through the re-entry of being back in the United States, I had also moved in with that boyfriend that I was dating. Um. And going back to AA Meetings. As I was adjusting to all that I found a lump on my breast in October of 2014 which turned out to be triple negative breast cancer and luckily I had signed up for the Affordable Care Act so um. I got accepted in September 2014 with that because I had no income. And um. And that covered all of my medical expenses for um. For breast cancer.
Um. So… What happened uh, after that to the plans you had made and hoped for going to Middlebury?
Those plans… Um, I guess were put on hold. They were put on hold. I didn’t know if I would ever be able to realize them because of the kind of cancer that I was diagnosed with. They say that it’s a large percentage, that it could come back within five years. Um. And I was really traumatized by having cancer, having to go through chemo, having a mastectomy, breaking up with my boyfriend, having to move a few times. Um. That I still figured, maybe someday? You know, I, I held onto my work clothes because I was hoping I could still fit into them some day. I gained weight from the steroids from cancer, um, you know. My chest was different now, what clothes would I fit into, like, oh no, am I going to have to buy new work clothes? How am I going to find the money for that? Um. I guess my focus was really on staying alive. And then, and then being able to work out so I could fit into the work clothes that I had and seeing how I could somehow get a job. Um. From that, and seeing what my stamina would be after going through treatment, what emotionally I would be (laughing) going through treatment.
And how, how did that turn out? Did you uh, look for jobs?
You know I went… So I went through treatment, and while I was going through treatment I was not able to work. I had four months of chemotherapy. Um. Then I had a, a single mastectomy and I was tired and very sick. Um. And after my dad died, my mom had dementia so she needed help with doctors appointments that I was taking her to as well. I’m sorry, what was the question, how did it work out?
Well, yeah. Basically, you had left Middle-Middlebury on a high, of a big--
Yeah!
Accomplishment of a lot of dreams, and um, then your father died and you were diagnosed, moved back home. What, you know, what, you know, describe your state of mind and what happened.
I was really depressed. I think that’s why I’m stopping, focusing on it, because it probably was a state of shock. I go through states of shock sometimes, and when I do that it’s kind of like a blur and I can, I can’t finish my sentences, stuff like that. So. I had um, I had implants put in in um… let’s see… 2015 and then the implants kept getting infected. One took turns getting infected with the other and I was under the care of Dr. Ross Cooperman, um, of Cooperman Plastics. And [laughs], and one of those implants landed me in the emergency room at St. Barnabus Hospital where you were there with me and uh, they did a CAT scan of my chest and they found that I had nodules in my lungs. And that’s where I was diagnosed with Stage Four triple negative, uh, breast cancer, or metastatic breast cancer. Um. I still had Medicaid so I was covered in New Jersey, and, um, that doctor gave me one, you know, he took the implant out and changed it. And then when I had one more implant infection I stopped going to see him at St. Barnabus and I went to the Cancer Institute of New Jersey where Dr. Ajet removed both implants because I had one more infection and I said, “Take them out, I’m done. I’m done with surgeries, I have to focus on the rest of the tumors that are growing on my body.” Um. So that’s basically what I started doing. I was really, really grateful to be on Medicaid.
I don’t know what I would have done, um, if I hadn’t been accepted through the Affordable Care Act, also known as Obamacare. Um. I was only-- I was only able to be treated in New Jersey, but thank God the Cancer Institute of New Jersey is an NCI designated hospital so. [Laughs] There are some good hospitals here. And I started my search, um, it was recommended that since my tumors were small, um, they were found in my liver, lungs, lymph nodes, and bones, um, that a clinical trial would be best to start with. So I’ve been on this, you know, in my shock, I’ve been on this wild goose chase for trying to find trials. Um. You, [unclear], came with me to my first appointment, you handed me a business card of a woman who is a triple negative breast cancer advocate and I called her trembling [laughs], and, what do I do? I don’t know how to do this? And she helped me and my family get on clinical trials dot gov, and now, with that, I mean, I’m making it sound simple but it was a good six months of brutally, like, screaming, crying, panicking, um, because the doctors don’t help you look for the trials, they only know about the trials at the hospital and there’s hundreds of trials, uh, out there, and they change [laughs]. And they open and they close. You have to constantly be searching, and I, although I do have some science background, reading science about the cells that could possibly change how my body is acting and keeping me alive just seemed very, very close and it puts me in a shock. So, um, I eventually did get on a clinical trial called Keytruda Pendulus Map through Merc at the Cancer Institute of New Jersey, it’s a Phase Two trial, and it kept me alive for about eight months, shrunk my tumor. I had minimal side effects, I didn’t lose my hair, I just was a little nauseous, um, plus it was immunotherapy, so it had the option-- you know, the potential to change my home cells. And it, my tumor shrunk, then they started growing again so I had to be taken off that trial and the oncologist at the cancer institute gave me a list of eighty trials to choose from and that was her trying to help me. But it really freaked me out! And I was like what do I do? How do I pick from these? So I would-- with your advice again, which you told me about Linda Godot who was a triple negative breast cancer specialist at the time she was out of Wile Cornell. Um. This is just showing how we help each other, how, which is really beautiful and this was, and by me speaking up, and, and saying, you know, even using social media which I use, um, you know, writing a blog and using Facebook and Instagram to say, “I need help”, things like that. People sometimes listen and respond and say, “Hey, why don’t you think about talking to this specialist?” or “Hey, maybe I can come with you to this appointment.” Um. So really, really grateful for that. I, went on, um, to, I went to meet with all these different specialists. I went to Sloane Kettering, I went to NYU, I went to Columbia Hospital, I went to Hackensack in New Jersey, Summit Medical Group. Um. Advanced Care Oncology. Where else did I go? Goodness. Um. I know there’s a few more. Weill Cornell.
Basically you became a full time patient.
Yes.
Um… How did you make ends meet being a full time patient? It sounds like the, uh, health care, um… Uh. Safety net worked. That part.
That part really worked. I did get on disability early on as well. Um. So I made eleven hundred dollars a month from disability and then after being on disability for two and a half years, you automatically get on Medicare and so I’ve been on Medicare for a few months. There was a short period where I was only on Medicare and not on Medicaid, you know Medicare only covers eighty percent. So I then had to pay for supplemental insurance which was MediGap, and I think that was four hundred dollars a month. Um. I think that there were also taking out like one hundred dollars a month or so from my disability to pay Medicare. I remember they were taking out something. So I paid for MediGap for one or two months, and then my sister learned about NJ Workability? So ah… I feel like she took me or you took me, someone took me down there and basically learned that if I have a job, um, like, people like me that want to work, that are afraid of working or too much or too little or what because we don’t want to lose our benefits that we actually really need. And we can’t risk, you know, starting a job and if that doesn’t work out, we have to have benefits. So this was this NJ Workability, um, I forgot what the minimum or maximum is but basically I’m working for my mom cause I take care of her anyway as a caregiver because she had dementia and we’re using, you know, that’s my job.
And so, with that job um. I’m able to get Medicaid. And that’s what NJ Workability is. So it covers that, Medicaid covers that twenty percent. I don’t have to pay for it. Um. I’m still making my eleven hundred dollars a month from disability. I make sixteen dollars a month from SNAP food stamps. Um. Or a receive it. [Laughs] And. Um. So now I’m, you know, I have Medicare and Medicaid so I can go to New York and be treated by, you know, by Doctor Kolinski who is now, my, my new oncologist out of Colombian Presbyterian in New York.
Do you worry about money a lot? Do you have what, you know, do you have money? Do You have a car?
I do have a car. I bought the car when I was um, when I got my full-time teaching job at a public school.
What was that?
A Jeep, a 2011 Jeep Wrangler.
Okay. And what about car insurance? Is that hard to pay for?
It is hard to pay for.
Have you had any car troubles you’ve had to pay for, mechanical?
No, I haven’t, thank God. [laughs] I think I did have to get my tires put on at some point in the past few years, cause I kept sliding.
Um… What about, you know, what are some kinds of, you know, economic things that you, that you want or need? Are you able to pay for them, are there things that you can’t have that you want?
Well, when I was on, ah, just Medicaid, I was seeing a therapist and she was one hundred dollars, you know, a visit. And that was very expensive. Eventually I stopped going to her because I just couldn’t [sighs]. I couldn’t afford it. And it also stressed, stressed me out, you know, to be able to pay that much money to somebody so unfortunately the year that I was diagnosed metastatic I didn’t have a therapist. Um. And I, I, h-h. It really took me to the point of depression where I mention the word suicide a few times. That my friends, um, strongly suggested that I go back to therapy. And I, I agreed with them. [Laughs] Because, you know, I knew that I needed a professional to help me with what I was going through. So with Medicare I can now see my therapist and I can see her two or three times a week if I need. She specializes in post traumatic stress disorder, which is what I think I need help with. Uh, and she’s even available on the phone [laughs] so, so that works out really well. Um. Other… complimentary things which sound… almost… you know, too, too nice, but complimentary things like a massage. Um. Like, I’m single, my mom has dementia. Over time, ah, I’ve lost with touch with the people that I call that I share blood with. Um. And I, [laughs] you know, human touch is really important. Ah. Especially when it’s touch that’s not from a doctor. And so getting massages was really nice. Besides human touch, just also getting the tension out of my body. [Laugh] Because being diagnosed with Stage Four cancer is really, really hard. Um. Things like paying for gas. Things like, you know, I mean, I’m doing that, but I find it hard. I have had some Go Fund Me pages that um. Friends have started for me. One was a student from DePaul Catholic, started a Go Fund Me page for me. Um.
Tell me more about that. Was it for a specific thing?
Yeah, it was actually at the time when I was, needing, looking, ah, I had to move and I was looking for a place to live. And I didn’t know where I would go, I didn’t know how I would pay for rent, I didn’t know how I would pay for moving. Um. I just was very desperate. And she saw that and she um. Created a Go Fund Me page for me that helped me.
How, how much did that raise?
That raised 10,000. I think. Or almost 10,000. Um. And I did use that for all, things like gas and food and moving. Um. Just. You know. Whatever. All the expenses that I needed. Um. During those first two years. [Sighs] Co-pays. Um.
Did, there was another one as well?
Then, yeah. Then, and then there was my friend in California, and I would say, you know, um, complimentary things like massages and, then I started seeing like an energy healer, or, um, somebody that does Reiki. Um. I started even taking, you know, taking CBD oil and all these things are expensive [laughs]. Um. Very expensive. And so we, she started a Go Fund Me page for like. Complimentary treatments like that. Sometimes I would have like a phone session with the energy healer out in California. So yeah. Things like that. And then recently there’s one on Meal Train, um, that if people want to donate money if um. Because of my new diagnosis with Stage Four and the brain metastasis and the new treatment [laughs]. And, and the ahh. The gamma-knife radiation surgery on my brain. Um.
Was there a copay for that that you had to--
No, there’s not. But, with all this action, you know, having to get to the appointments, and I forget to eat [laughs] when that, you know, that’s like not my priority so we started a meal train where people can um. Come and drop off a meal or if they live far away they can pay for a meal and have it delivered to my home which is very, very sweet. Um. And so they can, you know, also just put money on this meal train thing where if I need money to eat [laughs] or whatever, gas or whatever to get to these appointments, I can use that as well. Um.
What would have happened um, if, your mom didn’t live here and there wasn’t this family house that you bought so many years ago?
Uh… I don’t know. I don’t know what would have happened. I… don’t know where I would be living? I don’t get along with the people who I share blood with. Um. I’ve always been the black sheep of the family, I’ve always been the one that they liked talking about [laughs], they liked talking down to and blaming, even when I’m sick. And unfortunately things happen when you get sick and I’ve heard that families, it’s not uncommon that families and friendships and marriages break up. So. I uh, I don’t know where I would be. I have a feeling, you know, my, my sister said she would have taken me in. Um. And she probably still would. Ah. But, besides that. Whether I would want to? [Laughs] Cause it also has to be in, you know, an environment where I feel safe. Um.
Do you ever worry about being homeless?
Yes. Yes I do. Um. [Crying] I do worry about being homeless and this is. This is a crazy fear but, you know, my mom has dementia and she’s eighty-seveb and… And I worry because the other people I share blood with? Are well off already and have… You know, are settled in and well of, and, and I’m not. [crying] When I wanted to, I got… I got interrupted in my career and, and I didn’t choose to be sick and have a terminal illness, which I have. [Sniffs] So I’m afraid that if my mom dies before me [sniffs] that…. [sighs] What the will says will happen and I just don’t know where I’m gonna go. I don’t trust the people I share blood with.
What does the will say?
The will says that things will be split in three. I asked if I could have one of the houses-- my mom owns a few houses, she owns two, my brother bought the third house from her already. And I said, “What about the house, this house?” Like, the house, I grew up with, like, the one we still own? This house? And I asked that once, when I was in the hospital, and uh. Undergoing my surgery when I was in the room with the people that are on the will and my mom said, “Whatever you want” and one of them said, “Okay. That’s fine with me.” And the other said, “No, there’s three of us and it gets split in three ways.” And I’ve, I’ve gotten into arguments with these people I share blood with a few times where I’ve felt, this is my interpretation, where I’ve felt that they’ve known that I’ve been down. Like, they know that I’ve been having surgeries, they know that I’ve been going through chemo, they saw me, they even knew that my chemo markers were going up [sniffs], and for some reason, I feel incredibly kicked when I’m down by these people. So I have zero amount of trust that [laughs], if I am alive, if I do outlive my mom somehow [sniffs], that I am going to be taken care of in any way, shape or form. I don’t know what is going to be left. You know, I mean, if my mom goes to a nursing home, nothing could be left in the end.
So, so, how old are you?
46.
And so you feel like you are dependant financially on survival of your eighty-seven-year-old mother?
Yeah. And on disability. State. And on the kindness of…. People on social media. [Laughs] Like literally, they say my social work, my oncology social worker says we don’t choose our family. You know. Just because it’s family doesn’t mean we choose them. So I, I’m hoping that if I’m alive, that I, uh, [sniffs] end up, not living in a box somewhere. Because that’s not what I want to stay alive for. And I hope that with my own advocacy, you know, that I’m doing, that… [Sighs] Maybe, somehow it will work out? That… I don’t know. I, I can earn, you know, I want to be able to earn my own way. [Sniffs] Just in an understanding that I need health care. No matter what! Cause that’s not a joke.
Do you ever worry about politics in Washington?
Absolutely. Absolutely. Trump scares the shit out of me, from day one. [Laughs] From the day he got elected actually, I posted on Facebook that I was terrified of the changes in the Affordable Care Act. And somehow… Someone found me from the ACA and they started interviewing me and I got on this… Um… Panel with Senator Cory Booker and… Oh gosh, what was her name? I forgot. But she worked for the Human Health Services, HHS. [Takes deep breath] Anyway. Um. Talking about how we need, you know, people with pre-existing health, you know, pre-existing conditions need to have health care. And, not to put a max on how much, uh, you know. Insurance can cover us when we’re sick. All kinds of things. So that’s… Very scary, and I know that President Trump is still threatening the Affordable Care Act. So I don’t know what’s going to happen, on top of having my life [laughs]. I mean, I don’t know what’s happening with my life. Ah. You know. We also don’t know what’s happening with health care and where I’m going to live.
Y-You have become… An advocate, right?
Yeah. I have. [Takes deep breath] I… Yeah, so I guess it’s probably because I’m a teacher and I like to connect with people and, and educate them and share what I know and I rec-- people have told me I’m resourceful, so I like to get information, gather it, share it with others and educate them. So I guess that’s the same thing I do as an advocate when was first diagnosed. Was like, “What do I do? Where do I go?” And so the first place I went to was Share Cancer Support in New York City and I got involved with them. Like, they talked to me on the phone and then I went to their support groups. And then I said, “Hey, is there anything I can give back?” And um, they said, “Well, would you like to be photographed? Could you tell your story? Could we videotape your story and put it on a website?” You know, and I was like, “Okay,” so I kinda started doing… More of that, and, and getting more involved in more groups. Seeing who else was out there that could relate to my story, you know, that’s even how you and I met. And um. And then I learned the word “Advocate” and I guess what I was, what I was doing was talking about ren-- dense breast tissue since I had dense breast tissue. And that’s something that not many people know about. Dense breast tissue can really hide tumors on your mammogram. So when I learned about that, I started talking about it a lot. I learned about this organization called “Are You Dense?” And I guess just speaking about this means you’re an advocate [laughs]. And so I just started talking about the things that I thought were important to me. “Hey,” you know, uh, “your family could abandon you,” or “Your boyfriend could abandon you.” You’re not always necessarily surrounded by supportive people when you’re diagnosed with cancer. If you’re single, it could really suck. So I started advocating for that, I started a blog called Beauty Through the Beast. And I wrote about my experience on there. And then I started getting involved with maybe, uh, Ana-Ono Intimates. Mm. Lingerie for women that have had mastectomies or lobectomies and walking in their fashion shows at New York Fashion Week. I started [clears throat] speaking at conferences, so Cancer Care I spoke a couple of times at their conference in New York. And then I got involved in the AACR. I spoke for them at their conference. And also with the AACI, you know, and that is just, such an honor. To be able to have a voice. And, you know, going from being told to shut up as a kid and get out of the way to now, like, wait a minute, I have a voice. People want to hear what I have to say? That’s something that’s… new to me. Um. And I, I take that opportunity. I’m not afraid of public speaking since I was a teacher. Uh. I just recently graduated from National Breast Cancer NBCC… Coalition. Their project lead. Uh. What is it. Training for a week? They taught forty of like, all this scientific jargon so that we could be better advocates for ourselves and others. Um.
Do you get paid for any of this work?
I don’t. I don’t get paid for it but sometimes they sponsor me to go. Like, they sponsor me to go, they paid for the flight and the hotel and the food. AACI paid for me to go to Chicago. They just had their clinical trial conference and they paid for me to be a patient advocate. Um. In the audience. Um. And that was awesome. So.
And tell me a little bit about your modeling?
[Laughs] Yeah. I started modeling. I’ve always wanted to model. I love being in front of the camera, and eventually. Well. I dated somebody recently, in the past ten years actually, that’s a photographer and we would take photos together. He said that I look, you know, I came out nice in photographs, so I said okay. So I thought, hey, wouldn’t that be good since I come out nice and I like taking photos? And growing up one of my mom’s friends always said that I should model but nobody ever said anything about it. So when I got cancer and I, I lost my hair and it started coming back grey instead of the blonde that I had been dying it, I got so many compliments on my grey hair that I thought, maybe this is it. Maybe now I should really try this modeling dream. I mean, heck, I got cancer, I could die tomor-- [laughs] you know, I… Had a brush with death, I’m in between jobs anyway. What’s going to stop me from living my dreams? Like, oh my gosh. So I, that’s one thing cancer kind of taught me is that voice inside my head that says, “Don’t do that, you’re not going to succeed,” is more like, “just try it”. So I had that photographer ex of mine take some photographs of me and I spoke to some people that I know model, are grey hair models, and they connected me with their agents and I got more pictures and went on photoshoots and, and got a couple of small paid gigs. Um. But mostly unpaid gigs with cancer sites and, and that’s, like, I don’t honestly care. That’s all fine. I mean, I’d like to get paid [laughs]. Really I just really enjoy doing it. Um.
Not enough to make a living.
Not enough to make a living. Yeah. Um. My most fun part was walking in the Ana-Ono fashion show during New York Fashion Week. I love lingerie and I love--- my dream was to be a lingerie model so it just so happened in the most twisted way possible. [Laughs] God was like “I heard you! And I’m gonna make it happen, it’s just gonna be in this different way!’ And in fact, um. The designer of Ana-Ono, Dana Donnafree created a bra called the Chiara Bra. It’s the Chiara Collection and it’s made for flat women since I am now flat-chested. So. Yeah, you never know. [Laughs].
Um. One thing that’s um, sort of… Um, hard to describe but… You, you, we live in a town in an area that’s really wealthy.
Yeah.
You’re an attractive woman and you dress nicely, and not necessarily expensively but nicely--
Thanks.
Um. Do you find that people expect that, that you have an income that doesn’t match the world that you’re plunked in, in the middle of? Do you know what I’m trying to say? Like, going to restaurants and, I mean, do you feel like you um. You know, are in a world where people make a whole lot more money?
Mm-hmm.
And are you expected to be able to, um… Go along with that and be able to, you know, put your, do you have a credit card, are you able to put it in when you go out? Are you able to go out to dinner, eat, things like that? Do you know what I’m getting at?
Yes. Ah, yes. So this town is… A mixed town. You know, there’s a very large, affluent part of it. I don’t live in that part of it, I live on the other side of the tracks. I was always aware of it growing up. Um. And. Yeah. People do go out for meals a lot, you know? I just saw a friend’s high school daughter eating at a very expensive restaurant with her friend the other day. I was like wow, I could NEVER do that in high school, and we didn’t… [sighs] So um. Really, honestly, currently, when people invite me to a movie or to dinner… They usually pick up the tab. Um. Some, I have the meal train right now. Uh. Otherwise there are times where I’ll eat peanut butter and jelly sandwiches for a full month. I drink a lot of water [laughs] so, sometimes I’ll say I’ll just drink a lot of water. You know. Um. I had popcorn for dinner last nig-- I mean, there’s just, you know, ways, sometimes people drop off soup which is great because I can freeze it. I mean. Um. So. Yeah, I wish… I feel like this is a community that is mu-- I feel like I fit in more in a hippie community [laughs] more of like a, like not a, an affluent hippie community but like an actual hippie community. You know. We would just kind of go barefoot and wear tank tops all the time [laughs].
Have you thought about going back to Italy?
[Sighs] Oh, absolutely. Or moving to California. Yeah. But I need to stay where I have insurance. I am not, even though my parents were both born in Italy, I cannot get dual citizenship. Uh. So I’d either have to marry an Italian or have a job in Italy for three years to get Italian citizenship and I can’t [laughs] afford to wait. So. Yeah, I don’t know.
Anything that you’d like to add about this? Anything that I’ve left out.
Um. Just, I just, you know. This is not where I thought I’d be at forty-six years old. [Sighs] I imagined, and it took me awhile to get to my career. Um. It was a rocky road but, you know, I’m happy that I got sober and, and that that lead me to all my teaching degrees. It led me to my Masters. And amazingly, I’m, I’m very goal oriented. And it’s hard to have that with cancer. Because you never know when something’s going to rear its ugly head and you have to just put it aside [laughs]. And jump. So. Trying to figure out who this is, uh. My new normal? Um. I…. I pray and I ask God to tell me why I’m still here, what my purpose is. Because without a purpose I don’t… I don’t see a reason to stick around. And it’s, it takes me a lot of energy to stick around. Like, and a lot of medicine. [Laughs] You know? It’s easy if I want to stop taking the medicine. But. Um. It seems to me in the answers that are coming to me is that my purpose is to help others. Because I get a lot of feedback from people that have read my story or seen pictures of me topless, modeling, showing people what it is to go through this journey of cancer. Maybe that’s what my purpose is. Or, or to speak up for those that don’t know how to speak up for themselves. Um. So. I’d rather be jet-setting someplace, you know? Doing this and having cappuccinos and some piazza in Italy and then coming back and coming to New York and, you know, whatever, in my heels and, you know. Jumping in and out of cars just for me [laughs]. But uh. But I also love helping people. So if this is the way that I can help people. I just, I just, I need help sometimes too. So. [laughs] I hope. You know, I hope, you know? What comes around goes around. So. I guess that’s it.
Thank you for sharing your story.
Thank you.