Elise Gasbarrino, 35, is a busy woman. As Editor-in-Chief of Style Canada, she has her pulse on all things fashion and lifestyle related. Fashion is her passion, having worked at both Burberry and Oscar de la Renta. She is also a business woman who knows how to build a brand. She has charisma too and a genuine warmth. She is also a cancer survivor. At just 21 years of age, Gasbarrino was diagnosed with ovarian cancer. With very few resources for young women out there, she founded Pink Pearl and is now the Executive Director. Pink Pearl is an organization dedicated to bringing together young women with any type of cancer through a network of peer support and innovative programs. When we heard her story, we wanted to learn more.
What went through your head when you were diagnosed with ovarian cancer?
I was 21, going to Laurier for business administration. I was on a co-op term in Ottawa. I had been having pain in my abdomen and gone to a walk-in clinic. The doctors thought it was the flu or something. It was a good thing that I was going home the next weekend and could visit my family doctor. They immediately saw that something was wrong because I was even walking differently. It turns out that my tumour was large and ended up being the size of a basketball. They thought, because I was so young and the tumour was a decent size that it probably wasn’t cancerous.
I remember going through a lot of tests and everything happened very quickly. I actually didn’t know that it was cancer when I went I for the surgery. After, I remember that was the diagnosis coming from the doctor and the day was just like a whirlwind. I went right away to have a picc (peripherally inserted central catheter) line placed in my arm. We had multiple appointments that day. Then, I went home and started treatment two days later.
It was a whirlwind. It sounds like you didn’t really have time to process it?
I had some time after the surgery but I don’t remember thinking that I was sick. I don’t remember thinking that maybe I have cancer. I’m the type who always deals in facts when they are right in front of me. I try not to think too far ahead. That probably helped me a bit. I’m probably romanticizing it a little in my head, I’m sure that I was concerned, but it has been 14 years now.
As a young woman diagnosed with ovarian cancer, your treatment would have been aggressive. Talk us through what the treatment process was like for you.
It was three cycles of three weeks, so nine weeks in total. It was pretty intense. The first week (of the cycle) you were there every day. The subsequent two weeks were just once a week. I lost my hair, so that was a physical sign. Other than that, plus the picc in my arm, you really couldn’t tell. I think I’m more emotional when I think back on it then when I was in it. When I was in it, I was trying to do the things that I would normally do. I was trying to go to school. I was trying to go to parties and go out at night because it was summer. I was trying to do as much as that regular stuff as possible and that helped me in a way.
I remember it being exhausting. Sometimes, I just couldn’t get up or I would walk around the corner to the bathroom and be tired. I pushed myself harder than I should have at times. Overall, I tried to live as normally as I could, probably too normally. At the same time, mentally, that helped me. Ideally, it should be a balance of the two.
What type of support system did you have? What did it mean to you at the time?
I had wonderful support – my Mom came to every single treatment. Then, because I would be at school, I had some friends who would drive me down to Juravinski Cancer Centre. Everyone really helped me out and came to appointments and did things. That was massive. That’s why Pink Pearl started.
What gaps did you find in cancer support for young women? Are those gaps part of the reason that you founded Pink Pearl?
The main gaps are you go through those major transitions in your 20s and 30s. You’ll go through a lot of organizations that have a lot to offer, but they are not necessarily tailored to the AYA (adolescents, youth, young adults). I really needed to connect with someone my age, because there was so much going on. If you are 70 and have been diagnosed, you have done all those things that I have mentioned (job, kids, etc.). It’s just different and was a massive gap.
There are a lot of things out there but not all incorporate all types of cancers for females at that age. Cancer is not just about chemo. It’s about having cancer and dating or going to school and your career. When I was diagnosed, not one talked about how food can affect you. How you should keep your immune system strong. There are probably a lot of things that I would do differently, in hindsight.
It started because I had such a huge amount of support and I saw the value in that, but I was still missing that young person to talk to. There weren’t a lot of support groups for young adults with cancer. I went to a couple of wonderful organizations, but everyone else in the room was over 70. While I was finishing treatment, my family and I started a benefit that August. It was our first “Black and White”; it’s now “Black and White With a Touch of Pink”. We raised $15,000 that first year and it became an annual event.
For me, it was two means of support. You had your close family and friends who were present and involved in the day to day. Then you had community support who came out for this benefit.
What values lie at the core of Pink Pearl?
Cancer is only part of your story is one of Pink Pearl’s values – the idea is whether it’s something that you are going through right now or if it’s just a chapter because some people are able to close that chapter. Whatever that looks like for you – that’s what we focus on. We are focusing on the whole person. At our retreats, there are always discussions, whether it’s round tables on having children when you have cancer, fertility issues, grief, death and dying. Yes, there is information about cancer, but at a retreat, you may also be doing sound therapy or yoga or just chatting at dinner. Cancer is not the entire experience, but it’s part of the experience.
Take us through year one – how did you know what to focus on?
We had been having the benefits for a number of years, but I was more settled in my career and wanted to be able to help more. A benefit is awesome and needed to raise funds but I wanted to know who are money was going to, how are we supporting them, how can I help more people in my situation. That’s how Pink Pearl started.
A great group of women came together and we did our first retreat. We weren’t a charity yet, we just thought there is a need, let’s just do a day long retreat. We did it at The Good Earth in Niagara. Women ages 18-40 could come, bring a support person, whoever was helping them through their journey. It started out as a one- day retreat in Niagara, and now seven years later, we’ll have retreats all across Canada.
We decided to be targeted and do programming that AYA women wanted and I had an idea, based on what I had been through of what I thought people would want. We are responsive though. At every retreat, we ask questions about what more do the women want to see. We have our next retreat coming up in March and we are going to have time to reflect on programming and say this is what we have been doing, but so much has changed from my own time to now, so what else can we be doing differently knowing all of new information about food and wellness that we have now?
We had a lot of volunteers and now we are trying to build a sustainable team so that after I am out of that age range, we will have someone to carry on the organization. We have a formal board a lot of becoming an official charity and putting those positions in place has really just happened over the last year.
How do you define the focus of Pink Pearl now and what has been your area of focus?
I have officially come on as Executive Director in the summer of 2019. With respect to Pink Pearl we always keep our focus on the needs of the women that we are helping, and as mentioned, a lot of ideas come out of the retreats. This is a side passion of mine so I always want it to be meaningful. It has to be impactful, resonate and mean something. I don’t want to do programs just to do programs. We aren’t trying to check things off a list.
Our board is wonderful and it’s not like I have to hit certain milestones or certain goals that have to be met every year. For me, it’s where are we going to help the most people and do the most impact on the people that we are having. If that means we are helping one person and completely changing their life, then that’s better to me than having millions of people know about us.
There isn’t a lot of marketing or paid media behind what we do, it’s mostly word of mouth. I try as hard as possible to make sure that all of the dollars that we raise go into programming. It’s focused on our retreats and how we can help women there, and then all of our programs come out of the retreats. Our hospital support packages came out of the retreats. The packages have a list of resources and questions to ask about your care and treatment. We also include a bracelet of strength. Kids have bravery beads when they go for treatment and we wanted something physical that the women could wear to the treatment.
Why did you name the organization Pink Pearl?
It was a total fluke. Pink is the feminine side, not to stereotype, but this is going back 8 years. The pearl is also feminine, but also very strong. A pearl grows in a harsh environment and that’s really it. The pearl, at the time, was one of my favourite stones too.
I think what’s interesting with cancer is the grieving process. You are grieving for that life you used to have. There is the before cancer life and life after cancer.
It’s different in the population that we are dealing with to – the women 18-40. I was 21, so I remember my own before cancer, but who knows if I would have been a different person or not? A lot of women have those thoughts who were diagnosed a little bit younger. Why it’s so important is that if you think of your 20s and 30s, and all of the changes that happen at those ages. Your probably in school, then you get a job, then you move out on your own, you buy a house, you are in a relationship, you maybe have kids. All these things happen, then you get cancer. That idea of who you were before and who you are after….it can happen to some people so young; you may not have the memory of who you were before.
How does being a cancer survivor impact your life?
We have a program that’s running with Enactus in Toronto and it’s for women that have finished treatment and don’t want to go back to what they did before. Cancer is something that changes where you want to be or what you want to do.
I was so young when I was diagnosed and you don’t always know what your career path is at that age. I always knew that I wanted to be in business. I ended up doing what I think that I wanted to do. I was at the point where I hadn’t made that decision yet. It definitely made me not want to settle for things…ever. I knew that I wanted to be in fashion. It was a little bit of risk in that I didn’t take a job right away. I traveled and lived in Australia and England for a bit. I did my Masters in Milan and then took another risk. I was supposed to go back to Milan and ended up moving to New York when I went to visit a friend. I then found internships and was there for a decade. I don’t know if it changed the trajectory of things, but it made me only do the things that I wanted to do. Now it’s just embedded in me.
For me, personally having the retreats or to the benefits (for Pink Pearl), it’s always a reflection time to see how far things have gone. It is also a moment for me to be grateful.
You inspire so many people. Who inspires you?
My family and friends. There are two sides to me. There is the business side and I can get inspired by that way of thinking. There are so many women now that are inspiring in that space. It is more of a collective society – we are all so supportive of each other right now so that’s been great. I love Sarah Blakely’s story from a business side. From a cancer lens, it’s women that come to the programs.
What is your message to a young woman who has just been diagnosed with cancer?
Build your support network. That includes family, friends, doctors, nurses, specialists, nutritionists, community-based organizations like Pink Pearl. I was lucky that it seemed to happen for me naturally, but I think that sometimes you have to work harder at seeking those things out. Find your people. There is going to be negativity that comes with it at some points. You are dealing with so much on your own that you can’t lift everyone else up. Let people know that you are dealing with it how you want to deal with it and they have to follow along.