“ I love the NEW me! I never wanted cancer, but it has definitely transformed who I am and I am very happy with who I am today!
Amber Gillespie is another mAss Kicker heavily involved in Breast Cancer advocacy in Austin, Texas. Amber is currently involved with the Pink Ribbon Cowgirls and the Young Survival Coalition. She has spoken at many breast cancer related events and has become a very active breast cancer patient advocate. We first met her at a brain tumor walk in Austin, TX last year. We were fortunate to run into her again at a conference this spring. We are honored to sit down with her and ask her a few questions about her experiences as a breast cancer “thriver” and advocate.
mK: Thanks for doing this Amber! First question… What was your diagnosis?
AG: I was 26 when I was first diagnosed with stage 3 breast cancer in January 2012. My boyfriend at the time told me that my left breast felt weird and I should see a doctor, so I did, and the rest is…history? After chemo, bilateral mastectomy, and radiation, I was declared cancer free in September 2012. Then multiple reconstruction surgeries, and 2 years and 20 days after I finished radiation, I was diagnosed stage 4 breast cancer with metastasis to the bones.
mK: What were your symptoms?
AG: In 2012, my left breast was hard as a baseball and my nipple had turned out a bit. When I recurred, I had some bone pain, but I didn’t attribute it to bone mets. I thought it was just from the medications I was on at the time.
mK: What organizations are you involved with? Why?
AG: Probably too many… I am a State Leader for Young Survival Coalition – the largest organization for young women affected by breast cancer. I am a scientifically trained patient advocate with the National Breast Cancer Coalition, which is the most strategic organization I’ve come across that is mainly concerned with finding a cure to metastatic breast cancer. In Austin, I am a member of several groups – the Pink Ribbon Cowgirls (through the Breast Cancer Resource Center), The Young & Strong Fight Club, and We Fight Together (the latter two are groups of young cancer fighters and survivors of all types). Each group that I get involved with is different. I have been involved in a lot of the breast cancer organizations, but now I am trying to learn more about other cancers affecting young adults.
mK: What motivates you?
AG: Other young cancer fighters and survivors motivate me. Since I have had the opportunities to attend scientific and advocacy training, I seek to help others become their own advocates and build bridges between organizations that benefit young cancer survivors, hence why I am overly involved…but I love it!
mK: When was the first time you felt like yourself after your diagnosis?
AG: Hmm this is really hard one! I don’t know that I ever did feel like my old “normal” self after my first diagnosis. I would say the closest I got was when I started graduate school to pursue a Master’s degree in Public Health. I only got a month and a half into the program before I got diagnosed the second time, so I quit the program, which I don’t regret one bit. I think I only felt like “normal” me because grad school was super stressful and demanding.
I love the NEW me! I never wanted cancer, but it has definitely transformed who I am and I am very happy with who I am today!
mK: What makes you laugh, cry, angry?
AG: My girlfriends I have made through my cancer journey make me laugh and we cry. I have met so many amazing women throughout the country, and especially the group of friends I have in Austin. Cancer may have brought us together, but we aren’t defined by it. We are friends, and do normal friend things, but we are able to connect to each other on such a deep level. Stage 4 incurable cancer makes me angry. I just wish there was a cure already, but since I have the scientific training, I semi-understand why there is not a cure for cancer yet. Cancer is sneaky and really smart.
mK: OK, let’s get to know you better… What would you say is the most interesting thing you’ve done?
AG: I visited Alaska this past January and it was the first time I had ever been in snow (and -44 degree temps). My breath was taken away by the majesty of the Aurora Borealis. I went snow machining (snow mobiling), dog mushing, sledding, and snuggled with Alaskan Huskies. It was an amazing experience, and I hope to do it again!
mK: Very cool! What was the toughest challenge you faced as a survivor? How did you overcome it?
AG: I think this is an ongoing process. From a very young age, I knew my goal in life was to have a family. If you’d asked me when I was 10 years old what I wanted to be when I grew up, I would have said “a mom.” And then hasn’t changed, but cancer has taken away my ability to have a baby, be pregnant, breast feed, etc. My chemo in 2012 put me into “chemopause” and my doctor thought I would still regain my fertility due to my age (26 at the time of diagnosis). What she failed to really think about was my chance of recurrence – obviously no one can tell the future. When I tried to harvest eggs before I started treatment for stage 4 cancer, my ovaries couldn’t even produce a single follicle. I had my ovaries taken out in March 2015. It’s been tough grieving the loss of my fertility, but I know I will have family someday through surrogacy or adoption. I just need to find a husband first…send applications to… j/k
mK: HAHAHA! What is your guilty pleasure?
AG: I probably have too many except I am not ashamed of any of things that make me happy, so they aren’t guilty! If I had to pick, I would say singing in the car at the top of my lungs to whatever music I’m feeling that day. Music and dance are so powerful.
mK: OK, another weird question… If you could create a meal and name it after yourself, what would it be?
AG: That’s such an easy question. Mashed potatoes covered with bacon, several kinds of cheese, and some shredded BBQ brisket with a side of ranch dressing, Head Country BBQ Sauce (best ever), and cream gravy. That’s the main dish and it will come with a bean and cheese taco as a side dish, and then a bowl of Cookies ‘n Cream ice cream on top of a brownie.
mK: mmmm… What do you like to do in your spare time?
AG: What spare time? I do a lot in the Austin cancer community – I am on 3 different committees to help plan events for young survivors. I try to visit a lot of my friends who are in treatment or just need an emotional pick me up. I like to go to this boot camp called Camp Gladiator. Walking the dogs can be really relaxing for me too, once the crazy dog settles down.
mK: What are you up to now?
AG: Like at this actual moment? I am sitting in an airplane flying to New Mexico to visit my extended my family and see my cousin graduate from college. I’m wearing one of those medical masks for the first time on a flight, and I realized it’s a great way to get a whole row to myself! There’s a gorgeous sunset to look at from my window.
mK: Any advice for people or loved ones that get daunting diagnoses?
AG: Oh jeez! I guess my advice would be – don’t take anyone’s advice about how you should grieve this, what you should eat, how much you should do this or not do that. YOU, with the help of your doctors, will make the best choices for you. I’ve had so many people tell me to go vegan, eat all organic, exercise an hour a day, and on and on and on, but I think it’s important to remember YOU ARE IN CHARGE OF YOUR OWN SHIP! You can’t control the cancer, but you get to determine how you respond to it!
mK: Any parting words for all the mAss Kickers?
AG: I appreciate this opportunity. I think mAss Kickers is a great organization and I give out a lot of TUMORS SUCK stickers! KEEP KICKING mASS!!!!!
Amber Gillespie: Dog walker, boot camper, creator of the “Gillespie BBQ Happy Meal”, Car singing superstar, Alaska Admirer, passionate young adult survivor advocate, and breast cancer thriver. Thanks for doing this Amber! People need to know that you can still do your thing with a Stage 4 diagnosis! Thanks for what you’re doing!