“ Surround yourself with positive people and remove those that are toxic. Build a community around you that will offer you the support that you need and do the things that you love and that make you happy- because life is just too short.
Katie Brown is both a lung and cervical cancer mAss Kicker! She a cervical cancer survivor and lung cancer advocate since her father passed away from lung cancer. Currently, she is the Vice President Support and Survivorship Programs for LUNGevity, a certified Patient Navigator from Dr. Harold P. Freeman Institute in NYC and Certified Oncology Patient Navigator from the George Washington University. She is the foundation’s social media strategist. She is also the event founder for Breathe Deep Dallas-Ft Worth, facilitated DFW’s first in-person lung cancer support group at the Arlington Cancer Center, lobbied with Smoke Free Texas and for CPRIT, has been a local and national delegate for Livestrong 2006-2010. We met her years ago in Austin, Texas and reconnected with her in Dallas and shortly after in San Diego. We very fortunate to catch her in some down time and ask her some questions.
mK: Thanks for doing this Katie! First question… How did you find out about your diagnosis?
KB: In 1995 a yearly pap test found my cervical cancer. Thankfully it was discovered early and I have not had a recurrence of cervical cancer since having 2 surgeries. Last year I was feeling really run down, which doesn’t surprise anyone as busy as I am with my work. But this was more than usual. I thought I was having bad allergies (never had allergies before) I was having dizziness and headaches and my vision suddenly became very blurry. I blamed it on getting older (just crossed 40) and allergies. I went and got an eye glass prescription and went to my doctor for a checkup thinking my thyroid was just out of whack. He ordered bloodwork and was stunned to find that my liver enzymes were thru the roof and that I was in danger of liver failure. Over a period of 6 months I had every scan there was of my liver and a liver biopsy and more blood work and ultimately I was discovered to have a genetic liver disease called NASH, stage 3-4 with two masses on my liver. They are in a place that cannot be reached via needle biopsy so we are taking the wait and watch approach with MRIs every 6 months because this disease has a very high percentage of developing into liver cancer. This disease also caused me to become glucose intolerant and I will now always be classified as a Type 2 diabetic on insulin. Recently a scan of my thyroid discovered two nodules. The specialist is watching those too and ultimately when they grow they will be surgically removed. This is probably a separate condition from the NASH Disease and liver masses. Aren’t I lucky? HA! Despite all of that, I feel good. I get tired and experience diabetic symptoms, but I haven’t had any abdominal pain- it hasn’t slowed me down! I won’t let it slow me down!
mK: Wow! You are amazing! How did you get involved in cancer advocacy?
KB: My advocacy didn’t begin until after my dad was diagnosed with lung cancer- the deadliest cancer killer. Because there were few treatment options for people with lung cancer and there was no support for him or our family, I knew I had to work to change that.
mK: What organizations are you involved with?
KB: I started out 13 years ago as the co-creator of an organization that provides online support for people impacted by lung cancer, called the Lung Cancer Support Community. In 2006 that organization became a service for LUNGevity Foundation, the largest lung cancer nonprofit in the nation, and ultimately I went to work for LUNGevity full time. I am the VP of Support and Survivorship Programs.
mK: What motivates you?
KB: I am motivated by my personal losses to this disease. I never want anyone to feel the loss we felt when my dad ran out of treatment options and died 11 months and 21 days after he was diagnosed with lung cancer. I also feel an extreme sense of motivation working so closely with people who are living with this disease. I get to know and care about them. I become their advocate- their friend. I want to see them survive.
mK: So who are your personal heroes?
KB: LUNGevity’s president, Andrea Ferris, is one of my heroes. There is a kinship I feel to people who have been personally touched by this disease. My heroes are people who are living with and surviving cancer who also go outside of their own situations to help other people and make a difference in our world. My late mom and dad and friend Connie are my inspiration.
mK: Very cool. Let’s find out what makes you tick. What makes you laugh, cry, angry?
KB:. Supporting newly diagnosed patients is hard… Lack of treatments, support and empathy for patients make me angry and motivates me to work harder. My husband and kids make me laugh and remind me to take time away from work.
mK: What would you say is the most interesting thing you’ve ever done?
KB: I’m kind of boring. I haven’t climbed Mt Everest or anything. I have traveled quite a bit in my life. I lived in London England for a little while. I’ve met some amazing people and get to plan/host/attend some amazing events.
mK: We must be SUPER BORING if you consider yourself boring! Living overseas in London is pretty interesting! OK, what do you think is the toughest challenge a survivor faces?
KB: I think there are several challenges a survivor faces. One challenge is the maze of the medical system. Another would be long term side effects. The most basic challenges are access quality care and treatments as well as psychosocial care.
mK: Let’s get to know ya better! What is your guilty pleasure?
KB: I love being near and on the water (lake or beach) and white chocolate.
mK: Hee hee hee… you’re the first person to say white chocolate! Here’s another strange question for ya… If you could go back in time to any historical era to create a new life, where/when would you go and what would you do for a living?
KB: I think the time we are in is an amazing time in history. We are so blessed as a country. I would just wish my parents were alive today to have benefited from the advances in research. I would wish that there was no reason for me to ever have become an advocate or do what I do. I would be a photographer and an artist and be a mom and a wife.
mK: Great! What is next on your agenda?
KB: I am working on our next survivorship conference in Columbus Ohio and November is Lung Cancer Awareness Month– so we will have a lot of activity on our social media platforms and our website!
mK: Sounds like November is going to be a very busy month for you! Any advice for people or loved ones that get daunting diagnoses?
KB: Arm yourself with the right questions. Get educated about your diagnosis and options. Find an advocate at your treatment facility- like a patient navigator or social worker and build a support network of people who care about your survivorship. You don’t have to go thru this alone.
mK: Tell us something about yourself that people probably didn’t know… anything.
KB: Here are a couple of things:
When I was 14, I was a finalist in the Miss America Co-Ed Pageant which was a huge feat -during the talent competition my cassette tape wasn’t working properly so I had no music. I sang my song anyway. Was that an early indication of my crisis management skills? HA!
I speak Vietnamese– although I haven’t uttered a single word of it since my mom passed away in 2008.
mK: Any parting words for all the mAss Kickers?
KB: If you are a mAss Kicker, then you are already an advocate and you are in a great place to help you in your cancer journey. What I’d like to add is, surround yourself with positive people and remove those that are toxic. Build a community around you that will offer you the support that you need and do the things that you love and that make you happy- because life is just too short.
Katie Brown: Former Vietnamese pageant belle, frequent flyer, hydrophilic white chocolate lover, temporary British occupant, dedicated Lung Cancer advocate, cervical cancer-NASH-thyroid nodule thriver, and all-around cool gal! Thanks for spending time with us Katie! We will definitely keep an eye on LUNGevity for Lung Cancer Awareness month! Thanks for all you are doing to raise awareness for the plight of Lung Cancer patients.