Spotlight On A Superwoman: Meet Liza Talusan!

It's a very funny thing to grow up and start looking back on the other "grown-ups" who have filled your childhood. Once tall, all-knowing, and sometimes intimidating figures simply turn into fellow human beings; people to reflect on, learn from, and relate to in a whole new way. And thanks to social networking sites like Facebook (they do have their benefits!), we can re-connect easily and often. In the past few years, I've had the chance to be in touch with many inspiring  mentors, teachers, and professors from my past. One of those special individuals is Liza Talusan.

I spent 13 years (Kindergarten - 12th grade) at Friends Academy, a Quaker school on Long Island. It afforded me so many opportunities, but in retrospect one of the greatest gifts was its faculty. I first met Liza in middle school when she was a faculty leader of "Natural Helpers", a peer mentoring group I was part of in high school. Liza was undoubtedly known as one of those "cool teachers" - and not the kind that had to try for that title. Her personality was laid back, understanding, and just plain fun. She also formed Friends Academy's first a capella group - the Quaker Notes (for that name alone, she deserves a spotlight, right?) and we got to sing together for a while!

From left to right: Joli, Evan, Liza, Jada & Jorge -
a beautiful family

It wasn't until this past year, though, when I  started paying attention to Liza's  amazing blog, that I realized what a phenomenal woman she really is. As the wife of  Mr. Vega (the coolest of all theater teachers who also worked at Friends Academy), the mother of three beautiful children, and a full-time administrator at Stonehill College  (Director of Intercultural Affairs), you'd think she'd have her plate more than full.  But it seemed Liza discovered an entirely new level of energy and passion once cancer entered the scene.

On August 17, 2005 Liza's family was hit with life-altering news: their oldest daughter, Joli, was diagnosed with Retinoblastoma (a childhood cancer arising from immature retinal cells in both eyes) at age 2. In the years to come, Liza fought this battle hand in hand with her daughter and modeled true strength and love on the face of adversity (to the left is this dynamic duo).  Not only did they find courage, but they found meaning in this fight. Liza went on to become involved with families coping with Retinoblastoma and still works hard to spread awareness today. Cancer crept into other parts of Liza's life as well. Finding out that she was a "pre-vivor"(someone who is genetically positive for cancer but has not yet developed detectable tumors), just like her two sisters, could have had disastrous effects for someone so full of life. But Liza transformed even this news into something wrought with purpose, dignity, and beautiful strength. To be honest, Liza makes it that much easier for me to keep fighting my fight - she's living proof that nothing's out of reach.

While I began these spotlights intending to write about people currently living with chronic illness and/or disability, I thought Liza's perspective was an especially powerful one. As a pre-vivor and someone particularly motivated to live life, we can all learn so much from her. And if you didn't think Liza could be a bigger rock star, did I mention that she's about to run her SECOND half-marathon this October? It's an endeavor she has named "Marathon B4 Mastectomy" and writes about eloquently on her awesome blog. But enough out of me. At this point, let me let Liza's incredible voice speak for herself...

What is the year you were first diagnosed? How old were you ?  

I found out I was BRCA+ in October 2007 - after my sister, Mary, was diagnosed with breast cancer at age 36, and after my sister Grace tested positive for the BRCA gene. I had just turned 32 years old.

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

Finding out I was BRCA positive was made extra helpful by the fact that I had a wonderful support system of my sisters who had paved the way. I saw what they had both gone through, ranging from having to deal with aggressive cancer treatments to the preventative testing and prophylactic surgeries. Because of my family support, I was also quickly connected to many online support groups, most notably Facing Our Risk of Cancer Empowered (www.facingourrisk.org). They are a leading organization of professionals, patients, and pre-vivors who knew exactly what the BRCA gene was all about, the risks that are associated with being BRCA+, and the emotional turmoil that accompanies knowing your body is a ticking time bomb.   

Of course, there is no cure for BRCA; rather, there are a number of options for managing the risk of cancer: prophylactic surgery, chemoprevention, surveillance, to name a few. With BRCA, these measures involve both the breasts and the ovaries, each carry a different percentage risk of developing cancer. My advice is to arm yourself with knowledge, and embrace that even the knowledge is evolving. I do the best I can, each day, to manage the anxiety, the physical risks, environmental risks, and the emotional exhaustion that comes with hereditary cancer. I also do the best I can, each day, to embrace the lesson being BRCA positive has given me: to live life.  

Please explain a bit how your condition affects you. (for example: What are the symptoms and what is the hardest to cope with? Has the disease changed with time? etc. )

As a pre-vivor (someone who is genetically positive for cancer but who has not developed detectable tumors), there is a great deal of mental stress: "When will a tumor appear?" or "WILL a tumor appear?" or "Is this pain in my breast just a pain, or is it a tumor?" There are so many doctor's appointments, naturally, that come with being BRCA positive -- surveillance of both my breasts (through frequent mammograms and MRIs) and ovaries (ultrasounds and exams). There are also steps towards preventative mastectomies and preventative oopherectomies, each carry major side effects. Decisions whether or not to reconstruct breasts, take hormones, enter into surgical menopause, or which kind of surgeries to have are also very difficult decisions to make.

Given the odds (anywhere between 60-90% chance of developing breast cancer and 40-60% chance of developing breast cancer), it seems the longer I go without tumors, the more likely I am to develop them. Also, the older I get, the closer I get to menopause which seems to increase my risk. 

What are 3 things you couldn't live without?

1. Meeting other women who are also BRCA positive has been life changing. I attended the national meeting for BRCA, hosted by FORCE, and was able to see women in different stages of mastectomy recovery.

2. My sisters who are my role models in this whole process.

3. The support of my family, particularly my husband, who has been unconditionally supportive of my decisions. I've met so many women who do not have supportive partners, which simply makes this an even tougher process. 

                                                                                   

What are you most proud of?

In January 2010, I decided to do a "Marathon B4 Mastectomy". While I knew I wasn't going to run a full marathon before my surgery, I did commit to running a 1/2 marathon. C'mon .. "Half Marathon B4 Mastectomy" just didn't have the same ring to it! About 20 people joined me on this journey and, in June 2010, I ran my first 1/2 marathon. I came in nearly last, but I crossed the finish line! I felt so proud of myself that I signed up for a second 1/2 marathon that I'll be running in October. Now, while your readers don't know me, I always mention that I'm 5'3", 190 lbs, and certainly not built like a runner, especially a distance runner. I'm living proof that plus sized women are also strong, determined, disciplined, and motivated athletes, just like the skinny gals! 

Where do you get your strength?

I wake up every single day thankful for my family. My children, especially my oldest child who was diagnosed with cancer when she turned 2 years old, are what I live for each day. I want them to be proud of me, I want them to be able to talk about their mother with pride and admiration. I need to look in the mirror, every single day, and know that I made my kids proud. Selfishly, I need to know that I did something to make the world a better place for them and for generations after them.

Throughout my life, I've always been overly critical of myself: of how I looked, how I dressed, who I knew, who I didn't know, and what I professionally aspired to do. Yet, deep down, I lacked confidence and self-esteem and tried to always over compensate for where I fell short.  After being diagnosed as BRCA positive, I have learned to love myself. I have learned to love myself for my faults as well as my strengths. Whether it's chronic illness or a hereditary risk, I believe my condition is a gift. Knowing I'm BRCA positive has taught me to see the beauty in people, to withhold judging of others based simply on what I see on the surface. After all, no one can tell just by looking at me that I'm BRCA+, that I carry this incredible risk for developing cancer. So, in turn, I try my best not to judge others based on what they show me; rather, I try to approach them with a curiosity and acceptance for what I can't see.  

If you could send one message to medical professionals around the world, what would it be?

Accept that you may have said something 20x that day, but I may be hearing it for the first time in my life. I feel like this should be Bed Side Manner 101. And, maybe it is. But, in too many ways, I've been told really difficult news without any sensitivity. For example, when I was pregnant with my child (after I had found out I was BRCA+), a medical professional straight out just said, "Well, if you want, we can just schedule you for a C-Section and remove your ovaries at that time." So matter of fact. I was like, "Wait? What did you just say to me??" I was already so emotional from being pregnant, and here someone was suggesting a life-changing surgery for me as if it was nothing. Another example was when I was having an ultrasound of my breasts because I had found a lump, a medical professional decided to give me a lecture on why I should not breastfeed my baby. Should not? Yes, that's right. There was little I could do as I was laying on a table with myself exposed, and all I could do was fight back tears.

Thank you so much Liza! We're all better for knowing your story...

Love,

Maya