Tag: breast cancer

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Living with Stage 4 Cancer: Nalie Agustin’s Journey to Inspiring the World

Best-selling author, public speaker, and social media influencer has made it her mission to spread light and hope on her path to raising breast cancer awareness

“You have cancer.”

These are the words that changed Nalie Agustin’s life when she heard them for the first time in 2013. Eight years later, Agustin is thriving despite living with stage 4 metastatic breast cancer – and she’s doing it in the most inspiring way.

At 24 years old, Agustin found a lump in her left breast. Initially, she didn’t think much of it, given that breast cancer is known to be most common in older women. It wasn’t until the lump continued to grow larger that she decided to take action and seek medical assistance. After several tests, the results came back: On July 17, 2013, Agustin was diagnosed with stage 2 breast cancer.

Driving home from the hospital on that very day, after receiving life-altering news, Agustin recorded a raw, unfiltered and incredibly emotional vlog in her car for her YouTube channel. “The reason why I’m recording this is [be]cause I know I have a crazy journey ahead of me, and this is day one,” she says to the camera.

Eight years later, Agustin has a growing community of over 29,000 YouTube subscribers and 110,000 Instagram followers who are inspired by her ability to shift perspective, find inspiration in the everyday and remain resilient, brave and courageous despite her cancer diagnosis.

These unique abilities have been instilled in Agustin since childhood.

Growing up, Agustin was raised to be thankful for the little things. With family in the Philippines who didn’t have much, her parents always ensured that she and her two brothers understood the importance of gratitude. In the Agustin household, even a simple dinner began with a prayer. “We had to be grateful for everything on the table, no matter if it was big or small, or fancy or not,” she said.

The resilience, courage and bravery that she emanates today also stems from her childhood. As the only girl in her tight-knit family, Agustin was always ready to prove that she could successfully take on any new challenge that stood in front of her with determination and drive. Naturally, from a young age, her ability to face any obstacle head-on was clear.

After completing CEGEP in 2008, Agustin enrolled in communication studies at Concordia University, a program she felt would allow for the exploration of her creativity in several facets of media, including writing and video. As a self-proclaimed “multi-passionate” individual, this program was perfect for her. However, post-graduation in 2012, Agustin landed a job working in eCommerce where she felt incredibly lost and unfulfilled. She knew it wasn’t the right fit for her.

Photograph by Karolina Victoria Jez

“I always knew I was meant to do something special,” recalled Agustin as she reflected back on this time in her life.

While a cancer diagnosis may not have been her idea of “special,” raising awareness about breast cancer in young women and inspiring both the cancer and non-cancer community may have been the “special” she was searching for.

It wasn’t long after Agustin graduated from Concordia University that she received her diagnosis: stage 2 breast cancer.

She spent the following year in and out of the hospital receiving the standard treatment, while simultaneously sharing blog posts to “nalie.ca” and vlogs to her YouTube channel. “As a creative, and being a communications graduate, it just felt therapeutic and right to express myself and write,” she said.

Her blog posts were written in the form of personal diary entries. At the time, Agustin’s goal was to keep her large Filipino family updated with the treatments she was receiving, as well as how she was coping with the challenges she was facing.

What started out as a way to communicate with her close relatives and express herself eventually grew into a large and supportive online community.

“I dedicated my entire journey at that point to advocating and spreading awareness because I didn’t know any other 24-year-old who had breast cancer,” said Agustin.

As Agustin sees it, going through breast cancer at a young age raises unique concerns that may not impact older women in the same way, such as the potential of infertility.

In 2014, after chemotherapy, a mastectomy, and 23 rounds of radiation, Agustin was considered to be in remission. For three years, she was travelling, speaking and sharing her story with many individuals around the world. “I was really living that dream list of things I’ve always wanted to do,” she said.

The sense of freedom that Agustin felt was cut short in 2017, when she had a recurrence. She was diagnosed with stage 4 metastatic breast cancer — which spread to her lungs. “That was really traumatic because I really thought it was over,” Agustin recalled. “I really thought I was in the clear.”

A stage 4 diagnosis is considered incurable and terminal. Evidently, this reality was a scary prognosis that weighed heavily on Agustin and her loved ones.

Although difficult, she continued to share her journey with a growing social media following who were “beyond just followers on Instagram.” Based on the overwhelming support she receives, it’s evident to Agustin that her “followers” genuinely care about her health, happiness, and progress. This is evident in the hundreds of kind, supportive and empowering comments left on every post, and in the meaningful interactions Agustin has with individuals in her direct messages.

For a while, the cancer was quite stable and everything seemed to be going well — until May 2020, when Agustin’s cancer journey took an unexpected and unfortunate turn.

Agustin began experiencing neck pain, headaches, muscle spasms and sudden numbness in her legs. An immediate visit to the hospital and an emergency CT scan confirmed that Agustin’s cancer had spread from her lungs to her brain.

“All I remember hearing in my head was ‘no.’ No, this can’t be true […] No, this can’t be the end,” shared Agustin in an Instagram caption.

What followed were five rounds of whole brain radiation, Taxol (a chemotherapy medication) and stereotactic radiosurgery. “That was probably the toughest time of my entire eight-year journey,” she said.

“My brain is like my artifact, it’s where I get all my ideas, it’s what controls my whole body […] it’s my mind which is key to everything,” she explained.

With such a traumatic diagnosis, Agustin disconnected from social media. She knew that focusing on healing herself had to be the biggest priority. “I had really dedicated my last seven years to helping others, and now I realized I really need to help myself,” she explained.

However, although she temporarily ceased writing for her active online community, she never stopped writing for herself.

Writing by hand in her diary, Agustin wrote out her life lessons learned amidst the trauma.

When Agustin returned to social media four months later, she decided to make separate dated Instagram posts to update her followers. Each post represented an event or an experience that she had undergone during those intense months of treatment. But most importantly, each post had an incredibly powerful caption with an inspiring takeaway. Organizing all these posts within Instagram’s “Guides” feature, she titled them “The Diary of Nalie.”

These posts are the inspiration behind Agustin’s new book, The Diary of Nalie: A collection of life lessons and reflections shared while thriving through stage IV cancer.

“I always wanted to write a book and have something tangible and physical that my community can hold,” expressed Agustin.

Overnight, her book found its place as a #1 Amazon Best Seller in Canada, as well as in two specific categories: #1 Best Seller in Cancer, and #1 Best Seller in Practical and Motivational Self-Help.

“There’s such a big analogy between a stage 4 cancer diagnosis and not knowing what’s to come, and I feel like that’s what people are facing right now – complete unknown and uncertainty,” said Agustin, referencing how the ongoing pandemic has changed life for everyone.

In an Amazon review, one reader shares, “I do not have cancer and I felt like this book spoke to me […] This journal is raw and authentic with so many incredible life lessons that would definitely make you do a double take on how to perceive things in life and how to handle it with grace.”

Another reader wrote that “Nalie will walk you through her journey and inspire you to keep moving forward in the midst of your battles.”

Evidently, The Diary of Nalie is offering a glimmer of hope and inspiration that many are so desperately seeking in such an unpredictable time. That’s why Agustin believes her book has seen so much quick success.

During some of the lowest lows of her cancer journey, her book and its success has ignited a sense of purpose and joy in Agustin and her family’s life. Launching the book was a beautiful way to “flip the script and really celebrate the wins rather than focus on the trauma,” she said.

In true Agustin spirit, she has found a way to give back. On Oct. 20, she will be hosting a book signing at Maison Principal. All ticket sale proceeds will be donated to the Program for Women’s Cancer Research at the McGill University Health Centre Division of Radiation Oncology.

It’s been eight years since the words Agustin never thought she would hear changed her life.

But she will continue to live every day with gratitude and faith.

She will thrive.

She will grow.

She will evolve.

She is determined to do so.

“To me all that matters is focusing not on eradicating the illness, but making sure [I] feel as strong and good as possible, because when you feel strong and good, then that’s living,” she said.

While Agustin is eternally grateful for the medicine she has received and her team of oncologists at the hospital, she believes that’s only half the battle. “Healing happens at home,” she explained.

She believes that effective cancer care is the perfect combination between standard treatments in hospitals and integrative out-of-hospital holistic therapies.

Agustin’s years of undoubtable challenges have also been marked by unforgettable life lessons: taking care of your mind and body is key to truly living. Mindfulness, meditation, healthy eating and light exercise is “the reason I believe I am still here today,” she said.

Agustin is the epitome of what it means to face adversity and uncertainty with resilience and bravery. Throughout it all, she has continued to use her platform as a way of giving back in incredible ways. She remains driven to inspire thousands online, advocate for young women diagnosed with breast cancer, and be a voice of hope within the cancer community.

Agustin calls herself a “Thriver,” and by continuously sharing her genuine and authentic self, she inspires the rest of the world to thrive alongside her.

 

Feature photograph provided by Nalie Agustin

Categories
Student Life

Battling both disease and oppression

Sharon Batt, author of Patient no more: the Politics of Breast Cancer, is a long-time feminist health activist. Photo by Ana Hernandez

Canadian scholar Sharon Batt sheds light on issues within the healthcare system and her experience with health activism

Award-winning journalist and women’s studies scholar Sharon Batt discussed feminist health activism and social justice on March 6, as part of the Simone de Beauvoir Institute’s Feminist Café event.

Batt discussed her experience with social activism, the health system, wage disparities and intersectionality. She talked about the importance of understanding the health system—specifically the pharmaceutical industry—and the issues within it.

Batt said neoliberalism hasn’t delivered on its promises of equality. Neoliberalism is an altered version of liberalism that focuses on free-market capitalism. “Instead, we have rising inequality, unsustainable drug prices, and pharma-funded patient advocacy not serving patient interests,” Batt said.

Batt first became an activist in the 1970s. In 1973, she and a friend founded Branching Out, Canada’s first national feminist magazine. The magazine, which was active until 1980, was initially only distributed in Edmonton before becoming available in other provinces.

“That’s when I got involved in the women’s movement and doing grass-roots community work,” Batt told The Concordian. “We wanted to have a high-quality magazine that focused on feminist contributors and political issues. It got me excited about journalism, feminism and working in a community,” she said.

In 1988, Batt was diagnosed with breast cancer. She was treated for breast cancer from 1988 to 1989. She was also diagnosed with colon cancer in 2005, and was treated successfully.

Batt was a feminist activist through her journalistic work long before her diagnosis and treatments. However, after being diagnosed, she increasingly focused on health activism.

In 1994, she wrote her first book, Patient No More: The Politics of Breast Cancer. In her book, Batt offers a critical look into the cancer treatment “industry.” In 1991, she co-founded Breast Cancer Action Montreal, a group to help women fighting the disease. “I was working in the community with women who were feminists,” she said.

After working at the national level for the breast cancer awareness movement, Batt moved to Halifax to teach women’s studies at Mount Saint Vincent University for two years, where she was the Nancy’s Chair in Women’s Studies. The Chair title was named after Nancy Ruth, a renowned feminist and activist.

Batt said her experience with community work and academia is what brought her to Concordia. “This is one of the reasons I got the position [at the Simone de Beauvoir Institute] as a scholar,” Batt told The Concordian.

Batt was part of the second wave of feminism through the work of her magazine in the late 1970s. During that period, she learned that women’s health issues were undervalued. “There was a lot of interest in money [during the second-wave women’s movement], including cut-backs, and it was a hard period,” Batt said. She emphasized that the government focused more on economic issues, rather than on human rights and equality. “There was a conservative agenda for the last 20 years,” Batt explained.

Batt said she’s interested in getting to the root of cancers that affect women. “We need to understand why so many women get these diseases. A lot of them are environmentally-related. This is one of the reasons why I co-founded Breast Cancer Action Montreal—to raise awareness on prevention and the need to reduce toxic chemicals that can lead to cancer,” Batt said.

Graphic by Thom Bell

Now, the focus of the organization is on younger women and prevention. “We’ve worked on a project called FemToxic, which looked at chemicals in makeup and how to educate young women. This is new for us, since, when we started out, the focus was more on older women,” Batt said. “Touching younger women helps to bring more prevention. There are many things that younger women can learn from my generation.”

Batt’s message to Concordia students, especially female students: “Be engaged in the women’s movement. We all come into feminist politics for different reasons, and the passion you have for your own issues is vital,” she said. “Don’t be afraid to bring your issues to the floor, even if they may not be the central issues right now. Listen to other women who have different issues. We need a lot more conversation and communication on the diversity of issues that affect women.”

As for the future, Batt hopes to see change in the pharmaceutical industry and a reduction in the cost of breast cancer treatments.

Through her upcoming book, Health Advocacy, Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement, Batt hopes to educate people on health policy and women’s healthcare. “Medications are overpriced. I think community groups that are involved [in activism] need to voice that [issue], even if they are afraid,” she said. The book will be released on June 1.

Categories
Sports

Fighting breast cancer at Concordia

Stingers women’s hockey captain Tracy-Ann Lavigne helps sell baked goods on Friday night.

The Stingers participated in the 10th Shoot for the Cure campaign this past weekend

This year, the Shoot for the Cure drive celebrated its 10th anniversary, and all 47 U SPORTS women’s basketball teams participated in the event. Included among those 47 teams was the Concordia Stingers, who decided to make both their basketball and hockey teams a part of the event.

The Stingers incorporated Shoot for the Cure into their rivalry weekend. On Jan. 19, both the men’s and women’s basketball teams took on McGill, while the men’s hockey team played McGill on Jan. 20 and the women’s hockey team played McGill on Jan. 21.

The initiative was created in 2007 by University of New Brunswick women’s basketball head coach Jeff Speedy and, over the last 10 years, the campaign has raised over $1 million in donations, according to The Lance. The campaign is essentially a weekend where all of the teams in U SPORTS raise money for breast cancer research.

“These kinds of events tie together something that touches everyone on an emotional level, and we all want to be part of each other’s athletic lives,” said Swarm president Antoine Marchand. “We’re humbled by all of the efforts that have been made.”

Throughout the weekend, the Stingers sold baked goods at all of their games and had a kiosk set up where fans could buy memorabilia, with all of the proceeds going to breast cancer-related charities.

In addition to Shoot for the Cure, the Stingers have lent a hand to other initiatives this year, including Bell Let’s Talk Day which is happening on Jan. 25. For Marchand, helping out in the community is a large part of the Stingers identity.

“Helping out represents who we are,” Marchand said. “When you do things like this and try to help the community out as much as you can, it shows the core values behind how we carry ourselves and how we want to just generally make a difference.”

Over the last 10 years, the Shoot for the Cure campaign has helped raise over $1 million.

One of the big contributors of the weekend was the women’s hockey team, who, according to captain Tracy-Ann Lavigne, baked 200 cookies to sell at the games. The team also made bracelets and ribbons out pink skate laces to auction off.

The Ed Meagher Arena was decorated in pink as well, and players from all the teams wore pink jerseys and T-shirts during their warm-ups.

According to Lavigne, being a part of the Shoot for the Cure initiative was important for everyone on the team.

“We all did our part for it,” she said. “It’s important because one in nine women get breast cancer, and being part of a women’s sport here it could happen to us also so it’s good to raise money for it.”

Julie Chu, who is the head coach of the women’s hockey team, said Shoot for the Cure is a great way for the Stingers to reach out to the community. Chu said breast cancer is something that affects almost everyone, and has also had close family members go through hardships with the disease.

“In my family, we’ve had a bunch of cancer survivors as well as my grandma who passed away from cancer,” Chu said. “It’s definitely touched my life in a lot of ways, and it’s one of those things where we can’t take it for granted. Anything we can do to get more research to combat cancer is something we as a team want to be a part of.”

The women’s hockey game against the McGill Martlets was the last game for the Shoot for the Cure weekend which saw the Stingers beat the Martlets 3-1.

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Student Life

To donate or not to donate?

The little black dress, animal print, black pumps; there are some things that simply never go out of style. However there is a new trend the fashion industry has embraced, one that is not necessarily sartorially related.

Throughout the month of October some major industries, be they fashion, sports or automobile, take on the role of leading breast cancer awareness campaigns. Anything that can be made pink or have a pink ribbon printed attached is manufactured and sent out with the company’s logo plastered on it.

“Often these types of campaigns start off with the truest intentions of simply raising awareness and raising money for the cause,” said George Dassios, marketing faculty member and part-time professor at Concordia’s John Molson School of Business. “Eventually, as the momentum builds, it becomes one of those events where, as a corporation, you have the social and moral obligation to jump on board.”

When a company is highly influential it seems only natural that they would pursue these causes.

“Certainly, if you are a big organization that is in the spotlight and is part of a community, you have a social obligation to be active in one form or another through funding or sponsoring events or creating events that would, in one way or another, make that community better,” said Dassios.

Buying a shirt from Ralph Lauren’s Pink Pony campaign or that pretty bracelet from Michael Kors may make you feel like you’re doing something good, but it’s important to remain wary of where exactly your money is going once you pay.

“There’s always going to be an element or portion of the proceeds that will go to cover cost and some of the costs include [things not directly related to the cause],” explained Dassios. “To isolate it just in terms of the corporate community would be ignoring what goes on in every other organization.”

And while it is difficult to find a company which donates all of its proceeds to the fund being advertised, it is more important to watch out for organizations who are notorious for making money under the guise of fundraising.

According to “Think Before You Pink,” a Breast Cancer Action project, it was in 2010 that Dansko, a shoe company, was selling clogs with pink ribbons on them, in an effort to raise money for the Susan G. Komen foundation. However, it was discovered that Dansko was planning to donate $25,000 regardless of how much money was raised through clog sales, rather than give a portion of the purchases made.

These harsh realities should not dissuade you from donating money; they should inform us that there are scams out there and it is important to ask where your money is going if you do decide to donate or buy items for breast cancer awareness or research. The only sure fire way to make sure your money is going to help those with breast cancer is to donate directly to hospitals or research societies.

Categories
Student Life

For The Love of Breasts #2 – Is the pink ribbon discriminatory?

Graphic by Jennifer Kwan

We have all come to know and love the famous pink ribbon. When October rolls around, we see it plastered everywhere and the city becomes tinted with the ‘more feminine’ shade. Although the ribbon and its colour seek to represent the majority of those affected by breast cancer, there is still a demographic few know can also be diagnosed with the disease: men.

“The way our society is today with the media always associating breast cancer with women, like using women in awareness campaigns, the pink ribbon, ‘I love boobies’ bracelets, it makes it seem that it is a cancer that can only be found in women,” said Robert-Jun Corpus, a second-year accounting major at the John Molson School of Business at Concordia.

“It’s rare,” explained Sonia Nanda, a certified genetic counsellor at the Familial Breast Cancer Research Unit at the Women’s College Research Institute in Toronto, Ontario. “But it does happen […] because men do have breast tissue.”

The reason why women are more susceptible to it than men is still unclear but Nanda was able to provide some insight.

“It might be hormones, a lot of cancers are hormone dependent as well,” she said. “Women produce a lot more hormones and then there are a lot of other things: we have children, men don’t, we menstruate, men don’t, so there’s a whole bunch of factors.”

In 2012, according to a statistic put out by the Canadian Cancer Society, “an estimated 200 men will be diagnosed with breast cancer and 55 will die of it.”

And while survival rates for both genders are close, men often do not pick up on the signs and end up being diagnosed too late. Though women know performing breast exams on themselves and having mammograms is essential for their bodies, how many times have you heard a man telling his friends he’s due for a breast checkup?

Compared to the number of women afflicted by the illness – 22,700 Canadian women in 2012 – it is not hard to see why breast cancer in men is put on the backburner. However, this is no excuse.

“Right now, there is almost nothing pointing towards men being able to be diagnosed with this disease, but a little awareness would promote support from both sexes,” suggested Corpus.

In an effort to raise awareness for men battling this type of cancer, Marvel Comics has teamed up with Susan G. Komen for the Cure in printing eight pink-coloured limited editions of their most popular comics in order to shed some light on the topic of breast cancer in men. This is a great initiative seeing as comics might appeal to men than a pink ribbon.

While colourful awareness causes may seem like the right thing to do, considering the general population is left uninformed about breast cancer and its effects on men, it seems the money is being used to spread a message we are already very familiar with. At the end of the day, cancer doesn’t discriminate and neither should these campaigns.

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