Caroline Koller

My Life-Changing Cervical Cancer Diagnosis Inspired Me to Become an Advocate for Women’s Health

An unexpected diagnosis led me to a whole new perspective

Real Women, Real Stories

As told to Chandra Whitfield

I spent the night lying on the bathroom floor with my legs propped up against the wall, the only position that seemed to give some relief from the constant stabbing sensation radiating between my lower back and my rectum. And that wasn't the first time. This had become a habit over the last six months.

I'd been living with pain and unexplained bleeding that was particularly heavy in the mornings and worsened during sex.

It's hard to conceptualize living with symptoms like these every day for that long without knowing the cause, but that was me almost two years ago. It was all I could do to struggle through the workday, trying my best not to dissolve into tears of desperation. Once a vibrant woman with a jam-packed social life, I was isolating myself from my family and friends because I didn't want to be "that girl" showing up to dinner complaining through it all. I had no idea what was going on with my health, though it wasn't from a lack of trying. I had been to my OB-GYN, primary care doctor, holistic doctors, a sports medicine doctor and a physical therapist.

Everyone had different ideas about what was causing my discomfort, but none of the doctors were speaking to each other. I sometimes wonder if my medical mystery would have been solved sooner if they had. Even the man I was dating was convinced that intensive physical therapy would make the pain in my back finally fade away.

The one benefit of being up all night was that I had plenty of time to do research. So, I'd lie there on the floor of my New York City apartment, Googling different symptoms on my phone and reading different women's blogs. After five months, I diagnosed myself with cervical cancer.

It was obviously terrifying, but at the same time it just made sense. I told my sister, and she was supportive, telling me about a "super amazing" OB-GYN she knew in Manhattan. I called the office immediately, but she was booked solid for months. Desperate and fed up, I talked my way into an appointment at her office the following week. It was 7:30 in the morning, and I was screaming in pain as she completed an internal exam on me. Within five minutes, she began asking me intense questions like, Have you been raped? Have you had someone stick something inside of you that they shouldn't have? Have you ever done anything to harm yourself? Fortunately, the answers to all of those questions were no, but I could hear the gravity of the situation through her words. She confided that there might be a cancerous mass inside of me, adding that it could also potentially be hardened scar tissue from endometriosis. She scheduled a biopsy for the following week, but I didn't make it that long.

That same night, I ended up bleeding out to the point of nearly passing out. I was rushed to the hospital and a biopsy was done that night. The waiting game that I still feel at times began.

On October 18, 2019, I was diagnosed with stage 3c cervical cancer. I was actually relieved. I know that might sound weird, but I knew something was so, so wrong. And by that point, so much of my life had been adversely affected by this unknown cause that it felt like progress to finally put a label on what was happening to my body. It felt validating.

My treatment began immediately. I received chemotherapy every single week for six weeks in a row, no stopping. Not having a week off in between chemotherapy sessions is extremely difficult and draining on the body. The radiation also came with several harsh side effects.

For me, the worst of it was in my pelvis and rectal area, which made going to the bathroom so very painful. I also underwent internal radiation, an extremely invasive procedure called brachytherapy, that made me feel vulnerable. To do this, they opened up my vulva and then inserted a piece of radiation up against my cervix. That was followed by having to lie completely flat for 24 hours in the hospital with poles inside of me, holding my vaginal region open. I had to do that entire process twice, in back-to-back weeks. To this day, I still struggle with PTSD from being poked and prodded so much in that area of my body. I've had to work on being comfortable with things that used to seem "fun."

Today, though, I'm happy to report that I am officially in remission! I know that I will forever live with the crushing sensation of fear that the cancer could come back, but for now I choose to focus on the positive and spend my time trying to piece my life back together after experiencing nothing short of a health nightmare. I did not have to get a hysterectomy, but the radiation burned my ovaries so badly that they no longer function, sending my body into full-blown menopause. A hormone replacement therapy patch helps produce the hormones that my body is missing, so my mood swings and hot flashes, thankfully, have leveled off significantly.

Because of the harsh treatment plan, I won't be able to bear children naturally, which is a whole other beast to process being young and in a serious relationship. It's important for me to find the positive in the situation, even if just to ease my mind. Before my cancer treatment began, I was able to quickly freeze some of my eggs. A silver lining! Having my eggs frozen gives me hope that I will still be a mom someday and be able to see myself in my own babies.

My biggest takeaway, though, from being a cancer survivor is that I've become a fierce advocate for women's health. I started an organization called femUNITY to support women by encouraging them to talk to each other about what they go through in their health. My goal is to encourage women to advocate for their own health — because, let's face it, no one will ever be a better advocate for your own body and mind than you. You are the only one who truly knows what you're feeling and experiencing. If you feel something isn't right in your body, don't leave any stone unturned until you get the answers you need.

After cancer, a lot of people speak about rainbows and revelations and how the experience brought them closer to God. That's not always the case for me. Some days are hard, some days even harder, but most days are wonderful. And I remind myself constantly of how close I came to not being here for those days. As for where I stand philosophically today, what I can say — and I think my sister said it best — is that living past an advanced stage cancer diagnosis isn't a golden ticket of all-knowing, revealing the secret to life. It's simply a golden ticket to get back on the roller coaster that is life.

And I love that. I love this roller coaster and all of the people and moments that make it so worth living.

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