I was recently invited to speak at the Asian Breast Cancer Project gala, a fantastic organization that supports women from AAPI backgrounds to access culturally relevant information about cancer screenings, diagnosis and support. After the event, a number of people asked for copies of my remarks, so here they are!
To learn more about the Asian Breast Cancer Project, please visit their Facebook page here.
This post today is dedicated to Chien-Chi Huang, the fearless organizer of the ABC Project who is, herself, a cancer survivor. This past week, as Chien-Chi was selflessly organizing the gala, her mother died of cancer.
Chien-Chi, this is for you.
“Good evening, and thank you for this opportunity to share my own story with you and the reasons I am involved in the Asian Breast Cancer Project. My name is Liza Talusan, and I am a BrCA positive, previvor, with quite an extensive history of cancer in my family. Many aunts, uncles, grandparents have had cancer. Some are alive, some have passed. Even my own daughter, at the age of 2, was diagnosed with a rare pediatric cancer called retinoblastoma. So my family is no stranger to surgeries, radiation, chemotherapy, living and dying.
One of the lessons I am most thankful for in this twisted cancer journey is about bravery. I have seen my 2-year old daughter hooked up to IV tubes of chemotherapy, exposed in a small paper gown while the rest of us were in protective shields and rubber masks. I have watched my older sister brush clumps of her long, silky, black hair out while getting ready for my brother’s wedding – her first dose of chemo had just occurred a week prior. I have watched my aunts seem to shrink as their bone density decreased at the age of 50. I have kneeled at the pews of my Catholic church, praying for the peaceful rest of family members. We know bravery to be about being strong, about being resilient, and about being tough. In one of my favorite songs, we talk about “being bad, bold, wiser. Hard, tough, and stronger. Cool, calm, stay together.” But, for me, bravery has been about being exposed. Bravery has been about admitting when I cannot handle it all, when I cannot do it by myself, and when I must ask for help.
When my oldest sister was diagnosed with breast cancer at the age of 36, her doctors recommended she have the genetic test to see if she carried the BrCa gene, a genetic mutation that could give her, roughly, an 85% chance of developing breast cancer and a 60% chance of developing ovarian cancer. Because she tested positive, my sister Grace and I also tested and received the same results. My sister Grace and I were lucky – we were now armed with the knowledge of our BrCa mutation, could take steps to surgically reduce our risks of cancer, and we both elected to have prophylactic bilateral mastectomies. The three of us women are in the process now of exploring having oopherectomies, or the removal of our ovaries to reduce our risks of ovarian cancer.
Being able to go through this process of understanding our BrCa mutation and the surgeries we both required and elected to have, has been relatively easy because of the support system my sisters and I created for one another. We talked about our frustrations, our anger, our “WHY ME?” moments. We showed one another our scars, and talked openly about what bras worked and didn’t work, who wanted tattoos and who didn’t, how we felt about our bodies, and what being BrCa has meant to us as women, as mothers, and as partners.
When Chien-Chi approached me, just after my surgery, about the Asian Breast Cancer project, I knew that I wanted to be involved and NEEDED to be involved. See, when I was preparing for my mastectomy, I had made a commitment to train for two half marathons. I wasn’t a runner – at all – and my idea of exercise was watching my children play tag. When I decided that I would have my mastectomy, I knew I needed to be in the best shape possible to aid in my recovery. I started a blog called Marathon B4 Mastectomy. Over my year of training, I passed by hundreds of people –or, more accurately, they passed me. I shared the road with many runners, and was on message boards about health, training, and recovery. Though I shared much in common with runners and with people going through cancer, I was obvious to me that my olive skin, black hair, and Asian heritage was something I did not share with many. On long runs, I never encountered other Asian runners. I don’t see Asian runners featured in my running magazines. And, even to this day on message boards about cancer and health, I have only read from a handful of Asian survivors and patients.
One time, I got excited that I was reading a post from an Asian woman!
Yeah, that woman turned out to be my sister, Grace. Oh, well.
I have even attended conferences specifically for BrCa individuals, and my sisters and I are well aware that we are one of the only API women in the room. So, when Chien –Chi told me about the research that supports the need for the Asian Breast Cancer project, I knew she was on to something. I knew that Asian and API women were, of course, diagnosed with cancer. In my own family, there were many. Yet, where were they on the message boards, in the support groups, and in outreach? As the Director of Intercultural Affairs at a college, I know the various cultural reasons why people from Asian or Pacific Islander backgrounds might not engage publicly – I see this play out in the lives of my students and in other Asian American organizations in which I am involved.
Yet, I am also deeply moved by the kind of support that I had from my own sisters. That being able to talk about cancer, health, our bodies in a safe space has helped our healing. Though I have had these conversations with my siblings, I found it difficult to go to my first ABC event. What will I see? Who will be there? What will this feel like?
Thankfully, I quickly experienced that coming to the Asian Breast Cancer events actually felt like home. The women looked like my mom, my sisters and my cousins. I fought the temptation to call them “Tita” and “Ate” or “aunt” and “older sister.”
I was surrounded by women who – though they had different journeys from my own – looked like me. Many ate the same foods as me and my family. We felt the same discomfort about talking so openly about our bodies, our relationships with others, and the ways in which cancer, at times, made us feel less than who we are.
The Asian Breast Cancer Project also helped to raise the level of understanding and engagement with others. For example, a few months ago, we invited a nutrition expert to come and talk to the peer leaders. Though there are other nutrition workshops for cancer survivors, we talked about culturally relevant foods and practices. We talked about the role white rice played in our lives and the way our mouths watered when we thought about vinegary fragrance of chicken adobo or kim chi. We talked about bok choy, noodles, and beef broth – not as “exotic new diets” but simply as “food we eat on a Monday.”
For me, the Asian Breast Cancer Project has been a source of support, encouragement and education. But, it has also served as my foundation of empowerment, of validation and of sisterhood. It feels like home. It feels like family. And, it is a place where I can feel authentically me. Though I am without my breasts and will soon be without my ovaries, with these women, I feel whole. The wonderfully talented doctors may have saved my life by removing my breasts; but the Asian Breast Cancer has saved my spirit. To be with them is to be in healing. We can love one another through this.
Please join me as we continue raise awareness of the experiences of patients and survivors from Asian and Pacific Islander heritage. Yet, as we celebrate love, laughter and life here together in this room, I can’t help but think of all the API patients and survivors who are out there, right now, wondering if there is anyone who understands them, anyone who “gets” them or anyone who could possibly know what it feels like. Help us reach them, uplift them, encourage them, connect with them. Help us laugh with them, celebrate with them, and love them through cancer, recovery, and the many difficult decisions we all make in our lives.
Let us reach out, be brave, and demonstrate that bravery can be about letting ourselves be exposed. Bravery has been about admitting when I cannot handle it all, when I cannot do it by myself, and when I must ask for help. I am thankful for the help, for the kindness, and for the sisterhood that the Asian Breast Cancer has given to me. They help me continue my bravery, and I know I can go to them whenever I feel I just can’t do it by myself. They remind me to be bad, bold, and wiser; hard, tough, and stronger, cool, calm and how to stay together. For me, the Asian Breast Cancer Project is the love that saves the day.