To see all the photos from the shoot, click here.
C4S: Tell us a bit about yourself and your story.
Carolina: I was born in Santiago, Chile in April 1970 and grew up there. I was a competitive swimmer during my childhood and teenage years. I was always busy training and competing. Forty-seven years later… I’m living in Kuala Lumpur, Malaysia. I have been married for 20 years, and have three healthy and happy kids ages 16, 15 and 10.
C4S: How old were you when you were diagnosed with sarcoma? Where about in the world were you at the time, and when did you realise something was wrong?
Carolina: I was diagnosed with sarcoma when I was 17, and still living in Chile. I began to have pain in my right leg around the knee, but it started during competition time, and I thought (and was told) and it was probably some muscle issue due to the extra exercise. When competition season had ended I decided to take some tennis lessons to learn how to play it. After my second lesson, I started having the pain again, and within one day I could barely walk because the pain was so strong. At that point I realized it was something more and went to the doctor. They first diagnosed me with osteomyelitis (bone infection), and had surgery to remove it. In the biopsy they realized it was osteosarcoma.
With the hope that maybe my leg wouldn’t have to be amputated, my parents took me to Miami, Florida for treatment. I started chemo treatment right away, and after a few tests, doctors recommended that still the safest option was to go with the amputation. I was about to turn 18 when they amputated my leg above the knee. That was followed by 21 hospital stays, between chemo treatments, and extra visits due to low blood counts and other infections from chemo side effects.
C4S: How did losing your leg impact you physically? Was it difficult for you to accept?
Carolina: Losing my leg was a big challenge initially as I was an active and successful athlete, and thought then my sports career was over. It was difficult to accept, and maybe times I asked myself “why me?”. But then I decided I also needed to move on and stay strong to get through the rest of the treatment and rehabilitation.
C4S: What is your best memory at hospital?
Carolina: I feel very lucky that my whole medical team was outstanding. The oncologist, the surgeon and the whole nursing staff were so caring and supportive. I had a nurse that was particularly special in keeping me positive and looking forward. He would make me special milk shakes to make sure I was getting enough nutrition.
C4s: What was the hardest part of the journey?
Carolina: There were a few challenges during this journey. Not feeling well, and with many ups and downs was a challenge as I’m an active independent person. The rehabilitation was very challenging at times, as learning to walk again and manage a prosthesis requires extra energy. I would say though that the biggest challenge came, as a female teenager, feeling if not having my leg would limit me as a woman. I asked myself, will I meet someone that will love me like this, will I have a family, will I be active again?
C4S: What did you want to be when you grew up, before the cancer, and did that change once you went through the treatment?
Carolina: I was a few weeks away from starting college in Chile when I moved to the US for treatment. I was ready to go into business. My studies were put on hold for that year. When I went back to Chile I decided I wanted to go into journalism, a career where I could have closer contact with people, and tell their stories. A year after being back in Chile, I moved back to the USA because I wanted to go back to swimming competitively, and disabled sports in Chile didn’t have much support at the time. I was very lucky to do my rehab in Miami with one of the country’s top physical therapist specialized in amputee rehab. He not only helped me to walk again, but encouraged me to go back to swimming and I did. I participated in a few US Nationals, and did very well, so was invited to join the US team for Barcelona, Spain Paralympics in 1992.
C4S: Tell us a bit about your work with prosthetics.
Carolina: Living in the US and working with my physical therapist got me interested in that field. I went on to get my Masters in Physical Therapy. I worked as an amputee rehab specialist for a few years before moving abroad with my family. I really enjoyed working with amputees as I felt I could easily connect with them and they could be more motivated seeing me as someone that had gone through the same experiences.
C4S:Have prosthetics evolved much since you had your first one?
Carolina: Yes, significantly. The various options of knees and feet based on your activity level and what you want to use it for has evolved tremendously. The unfortunate part is that it that they’re still so expensive, that depending on location the accessibility to people varies greatly. I wish every amputee could have a good prosthesis to help them enjoy their life.
C4S: You seem to have recovered from the surgery and the cancer very quickly, given you were in the paralympics after the ordeal. Tell us more about your swimming history and your experience with the paralympics.
Carolina: Well, I already touched a little bit on my swimming history. As I mentioned, as an amputee, I went back to swimming in 1990 and participated in a couple of National Competitions in the US. And then joined the US team for Barcelona, where I won an individual bronze in the 800 meters freestyle and a gold in the 4×100 meters medley relay. It was an amazing experience.
C4S: Were friends and family crucial for your recovery?
Carolina: Totally! The support of friends and family was the key to success. My mom was my strongest pillar throughout the whole process. She put up with a lot during those months, and I’m forever grateful for her unconditional love and strength.
C4S: Do people often ask what happened to you? What is the most memorable comment a stranger said in response to hearing about your story?
Carolina: Adults are always more hesitant to ask, where kids are great, they don’t care. Some kids think it’s very cool as it looks robotic (when I don’t have a cover on my prosthesis). Going through security at airports it’s always an adventure because I never know what I will have to do, just be scanned, or touched, or go to a private room to show them the prosthesis, asked to take it off, etc etc. But I think a funny one was one time traveling through India with some girlfriends (about 6 years ago). At a small airport I was asked to privately show the leg to a female agent, she looked at it, touched it, and then asked me if the other leg one was “original”. For sure it became was of the funny memories of our trip.
C4S: Do you think you see life in a different perspective compared to most people?
Carolina: For sure, definitely I don’t sweat the small stuff. I think going through an experience like this makes you appreciate more how precious life is, so I don’t like to waste my precious time worrying about things I can’t control. I think that makes me more easy going and balanced.
C4S: If you could give advice to families battling sarcoma, what would it be?
Carolina: I think the most important thing is the support but to remember to let the patient still be him/herself. I didn’t like feeling dependent, and for most things I didn’t need to be. So for the patient, be strong and stay positive because I really believe that positive attitude and good vibes helps healing. For family and friends, don’t be afraid to ask and offer help, but also respect the patients space and independence. As a patient, you still want to be yourself first, and then the cancer patient.
A VERY BIG THANK YOU TO CAROLINA AND PRAKASH DANIEL FOR MAKING THIS PROJECT HAPPEN