Because so many family members had been diagnosed, Carolyn had always been on high alert—she was convinced that cancer was eventually going to find her. But, when she was diagnosed in 2006 at age 43, she didn’t realize how it would also change her.
I was on vacation in France and found myself depressed for no reason—and I’m never depressed—I was also getting my period every 10-12 days. Luckily, I had my annual appointment with my gynecologist scheduled for the week after I returned home. She performed a trans-vaginal ultrasound in her office, and it showed a mass. She mentioned looking for blood flow. I’d had enough experience with cancer in my family to know what that meant. She scheduled a second dopler ultrasound for later that week which confirmed I had ovarian cancer.
I found the gynecologic oncologist I wanted to perform my surgery and at my appointment, he ordered a second ultrasound; this time it showed that I had both ovarian and endometrial cancers. Because both of my parents were survivors, I knew I could have a positive outcome, but I always figured it would be breast cancer because of my mother and grandmother’s histories. Unfortunately, my husband hadn’t had the same positive experiences with cancer; he was afraid I would die.
I did a lot of research, both on-line and off to better educate myself. That’s how I discovered that ovarian cancer is considered a silent killer. It was helpful to arm myself with information about options and treatments, especially given that you’re not going to hear half of what the doctor says.
I was in the hospital for about five days. While there, I had an allergic reaction to the antibiotics and was unable to keep anything down. Finally, they sent me home and told me to start walking. I did, went back to work in two weeks’ time and did a major photo shoot the following week.
When the doctor called about a week after my surgery to say; “We got the pathology report; we got it all, there’s no further treatment; you’re done” I was shocked! I was so focused on getting through the surgery that it wasn’t until I was home that I said, “fuck, I have cancer”…but by that time, I no longer did. The pathology showed that the cancer was still encapsulated, Stage 1B. I joke that I had cancer for about two weeks; for me, cancer was not the huge ordeal that others experience, but I now had the opportunity for cancer to change my life.
After the surgery, I knew how very lucky I had been and I was searching for something more meaningful than photographing English muffins for a living. I felt compelled to do something for others who weren’t as lucky as I had been, but what?
A Sense of Purpose
One day I received a random email from British Airways—it was an essay contest offering 10 free Business Class flights. Suddenly it came to me, I immediately wrote the required 3 essays, speaking from my heart about how I would use these flights to produce a photo documentary project that would show the global face of cancer. I wanted to show that regardless of race, religion, nationality or economic status, we are all one in the battle against cancer. Three months later I was notified that I had won the competition. I felt like I was back to where I began in my career: photojournalism, but now with a more vested interest and stronger sense of purpose.
I reached out to the World Health Organization but they only have 3 full time employees working on cancer. They referred me to the Union for International Cancer Control in Switzerland, the largest member-based cancer non-governmental organization in the world. With their help, I mapped out my plan for the next 12 months: 14 countries (many with little access to resources), interviewing patients, survivors, care givers, and medical professionals trying to give a global face to cancer. I saw a tremendous lack of awareness and little to non-existent support programs for cancer patients in low resource settings, so in 2012 I started Global Focus on Cancer (GFC), a non-profit organization to help address these.
The Same Fears
Cancer had a marked impact on my relationship with my husband. We were in our early 40’s and for him it was far scarier as it was all out of his control. He used to feel like he could take care of me, but now he felt like he couldn’t help. He was lost knowing that there was no way for him to protect me. Caregivers are often overlooked in the cancer care continuum. The focus is on the patient, the caregiver provides physical and emotional support while feeling all the same fears with little given in return to them. GFC is building a project in Colombia and Vietnam designed to address the needs of the often-forgotten caregiver. The lack of emotional support from physicians is universal, it’s generally not something they are taught or have time to deliver.
Another major issue for me, was that surgery for gynecological cancer throws you immediately into menopause, a major problem that doctors don’t want to talk about. It’s an important conversation that needs to happen. If men can have erectile consultants for prostate cancer, why are gynecological cancers so unsupported? I feel badly for my husband because in a way cancer took me away from him, it changed our relationship. It has been difficult for both of us.
I tell people to arm themselves, get as much information as you can and learn about the options and treatments; get support from the people around you and protect yourself—you don’t need people who aren’t helpful, be a little selfish. Whatever you do, stay positive; don’t go to the dark side—it can be so easy to do, but don’t do it. De-stress your life: a year and a half before my diagnosis, I had intense stress in my life. I’m convinced it impacted my health.
Now I feel fearless to try or do almost anything—what’s the worst that could happen? Cancer gave me a sense of perspective and I feel empowered, no longer worried about the little things. It just carves a little emotional chunk out of your life. I have some guilt that I got off so easily; I was so lucky. It was karma that I need to give back. So, I feel it is important to do the right thing, do an important thing. I don’t want to waste time.