August 29, 2015
The HERA Foundation sends a big shout out to Samantha Lockwood.
Samantha is a living loving example of why we exist and why we stay focused on our mission to eliminate ovarian cancer through Health, Empowerment, Research, and Awareness. Samantha gave the world a wake up call when she was diagnosed at the young age of 30. Samantha turned our heads and broke our hearts here at HERA.
She became a reason for our existence and a reminder that we must fight to end this cancer. Samantha has dedicated the eleven years since her diagnosis to HERA. She is driven to educate women on how to spot the symptoms early to ensure their lives will not be taken. She has rallied her friends and family to help her raise over a $143k to fund cutting edge research for better treatments, diagnostics and prevention . She has educated countless women, and the men who love them, about the symptoms of ovarian cancer and has heard from many women who were diagnosed early after hearing Samantha talk about her experience. She inspires every woman in her wake to embrace the challenge and move forward with grace.
After, serving as an Ambassador for HERA since 2006, Samantha joined the Board of Directors in 2009 and quickly percolated to a leadership role on the Executive Committee. Ultimately Samantha was elected to serve as the President of the Board in 2013.
Samantha has never been shy about sharing the impact ovarian cancer has had on her life. As Samantha closes her term as President, she gets raw and real for our HERA family in this interview.
Samantha you were diagnosed at a young age. What changes did you first notice with your body when you became suspect that something was wrong?
Actually I didn’t notice anything that I didn’t chalk up to stress. I was 30 years old. I had a new job, was ending a relationship and had recently moved. Life was hectic. I had stomach aches but that seemed normal given my circumstances. My first inkling that anything was actually wrong was when I went for my annual gyn-exam and the doctor felt a mass that seemed too big to be a normal cyclical cyst. He suggested surgery but left the timing up to me. It was winter so I wanted to get it over with in time to climb in the Spring. At the time I remember asking if cancer was a possibility and he said “absolutely not, you are too young for cancer.” Fortunately, even though I didn’t suspect cancer, a friend of mine urged me to see a gyn-oncologist with the understanding that I wanted to hold on to my ovaries. Gyn-oncologists have more experience with surgery than regular OBGYNs so we figured I should go to the doctor that had more surgical experience. I am lucky because I live in Philadelphia where it was easy to find a gyn-oncologist. Later I found out that having a gyn-onc perform the initial surgery increases survival rates by 25%. Note that the survival advantage depends on the stage of ovarian cancer being operated on.
When you heard those devastating words, that you have cancer what was your initial response and how did you process it?
Well, when I first came out of what was supposed to be routine surgery, my parents were there and they gave me the news that the doctors had removed my ovary and “some other stuff that looked funny” but they wouldn’t tell me why. I was very loopy from the surgery so they were cautious that I wouldn’t react well, plus, as you can imagine they were devastated and not really processing it themselves. Of course I was livid and heavily medicated. I remember yelling at anyone who came in or called because the doctors “stole my ovary”. Fortunately this outburst brought my family some comic relief. The next day the doctor came in before visiting hours. He realized I was still not informed so he gently touched my foot as he explained cancer was why he removed my ovary, fallopian tube and pelvic tissue along with some lymph nodes. It was surreal. I don’t remember much after that.
You’ve participated in nearly 20 events for HERA, always using the team name Bury the Dragon. What is the meaning behind that name?
When I was first diagnosed I had just started dating a guy, we were starting to fall in love but it was all a new relationship. Six months in I was recovering from a major surgery and I was bald. I’ve always had a low maintenance style so wigs never appealed to me, too much fussing was required and they were too itchy. I usually wore scarfs on my head but it was summer and it was hot and humid in Philadelphia. Plus, whenever I wore a scarf people on the street would look at me with sympathy. I hated that. If I was out it was because I felt strong and good, I didn’t want to be reminded of my disease every time someone gave me a sympathetic look.
I remember one day walking to a restaurant with Mark, I was sweating and miserable. I asked him if he would be embarrassed if I took off my scarf. Of course he wouldn’t but when I did, I felt like I was naked. I was so embarrassed. The next day, my blood counts came in strong so I went to the tattoo shop and had a dragon tattooed on my head. I was able to go bald during the hot summer and no one looked at me like I was pathetic. No one realized I had cancer! People thought I was a tough girl which was totally new to me. By the way, Mark and I ended up getting married five years later while I was going through my second bout of ovarian cancer. I was completely bald for the ceremony.
You have been an amazing role model to women who receive a similar diagnosis to you. What do you tell women when they reach out to you for advice?
- Spend your days doing what you love, when illness won’t let you do what you love, find something else to love and do that. I love climbing but there were many days that I couldn’t climb, so I spent a lot of time knitting.
Don’t be afraid to ask for help. This one can be very difficult. But learning to ask for help is a gift to yourself and to the people who love you.
- Get some thick skin… well intended people often say some pretty insensitive stuff. One time someone who I didn’t know at all, asked me how long I had to live!
- When you are waiting for a test result try not to spend the time before you get the result paralyzed with fear, it won’t change the result. Enjoy not having bad news and deal with the bad news when and if it comes.
- Never ever let anyone tell you that you have to be positive all of the time. It is ok to grieve, be angry and be scared. This disease sucks and it brings out every emotion. So many times we feel pressure to be positive constantly. For me, oppressing emotions is really not healthy.
What advice do you have for women in general when it comes to the overall management of their health?
In addition to having cancer twice I also broke my ankle very badly last year. The lessons I learned from cancer absolutely applied to those two surgeries and five days in the hospital getting my ankle fixed.
- Find the best doctor around. Go see the expert. Interview them for the job. Hire them for their skills not their bedside manner. If you don’t like them, fire them. You are the CEO of your healthcare. Educate yourself about treatment options and clinical trials. Advocate for yourself and if you aren’t feeling up to it, bring a friend or family member along to advocate for you. Do not be afraid to question your doctors. They are not always right, they sometimes make mistakes. Write your questions down before your appointment.
- Get a second opinion.