Emily

Cancerversary: October 2013

Age at diagnosis: 30

Diagnosis: Adenocarcinoma

Stage of cancer: II

Cervivor School Graduation: Indianapolis - January 2016. Cedar Rapids, Iowa - October 2016.

How my story begins: The first 30 years of my life were happy and easy. Since then, my years have so far been difficult.

Life before cancer was good. I was living on my little acreage in the country with my dog, cats, chickens, fish and snake. I'd been at my first full-time job out of college for six years. My boyfriend had just moved in four months earlier. And I was healthy. I always went to my primary care doctor annually for a physical and Pap test. Other than that, I didn't need to go to the doctor. I was healthy. All that changed in 2013.

In January 2013, I turned 30. In May 2013, I went to my primary care doctor for my annual physical and Pap test. (I went every year, as this exam was how I got my birth control prescription renewed.) During the exam, my doctor said my cervix looked different from last year. She sent me on to a gynecologist who did a colposcopy two days later and called me to say I had cancer. She sent me on to an oncologist, who examined me two days later and confirmed the diagnosis of cervical cancer, stage 2B.

How I felt after diagnosis: I was in disbelief because I physically felt fine. I had no symptoms...no bleeding, no pain. I had innocently went to the doctor to renew my birth control prescription, but instead I was told I had cancer. It was shocking to realize that a year ago, my Pap results were normal and in the course of just one year, I now had a 4cm tumor growing on my cervix.

Telling my family and friends: The first person I wanted to tell was my mom. I needed her reassurance that it was going to be ok, even if it really wasn't. And she gave me that.

Otherwise, I kept my diagnosis and treatment pretty private and didn't start sharing my story with family and friends until I was months out of treatment and the long-term side effects started. It was actually easier to keep treatment hidden than it was to keep the side effects after treatment hidden. Sometimes the side effects force you to share your story sooner than you would have liked.

At diagnosis, I only told my immediate family, the co-workers that needed to know, and a few close friends. I didn't know what to expect as treatment began, so I didn't want everyone to know. For me, it was easier to have fewer people know.

My treatment: 5 rounds of Cisplatin chemotherapy
25 rounds of external radiation
5 rounds of internal radiation

How I felt after treatment: After treatment, I felt lost. You go from seeing doctors and hospitals every day to seeing no doctors and no hospitals for several weeks. You are expected to go back to work and pick up your life where you left it before cancer. But life isn't the same after cancer, so you can't just pick it back up. I felt very alone because I wasn't around other cancer patients anymore, so no one understood me. Everyone else expected me to feel happy because treatment had ended, but I really felt alone and confused. I was far from happy. I needed to find another person out there just like me...another young adult cancer survivor.

What was most difficult for me: Two things have been most difficult for me during my cancer journey. One, I had long-term side effects that started a few months after treatment ended, which have made me more sick than treatment ever did. And two, I felt very alone during the first year after treatment because I didn't know any other young adult cancer survivors or cervical cancer survivors.

I made it through treatment feeling relatively fine, both physically and mentally. After treatment ended, I started having severe digestive issues and was unable to keep food down. It was difficult to feel more sick after treatment had ended than during treatment. (It turns out that the radiation treatment caused some intestinal damage.) So, I devised a pretty restricted diet that works for me and if I stick to it, my digestive issues are manageable. It's taken the last four years and multiple doctors in multiple states to figure out how best to manage my digestion. It's not perfect, but it's working!

After treatment ended, I also struggled with feeling very alone. A full year later, I met another young adult cancer survivor. It was life-changing. She understood me instantly. Finding your community is so important as a cancer survivor. We need each other!

What I did to help myself: To help my physical health after cancer, I sought referrals to every local specialist and even out-of-state specialists. I used my voice to advocate for my own health care with doctors who wouldn't listen until I got appointments with the specialists I needed to see.

To help my mental health after cancer, I attended a national young adult cancer survivor conference by myself. I met lifelong friends at this conference and almost forgot I had cancer for four glorious days. It was the community I needed.

My life after cancer: Life after cancer is just ok. I'm still living on my little acreage in the country, currently with my cats, fish, snake, and no boyfriend. I have changed career paths to something less active, which is better for my physical health. And I'm cancer-free.

Where I am today: Today, I'm figuring out life after cancer every day. I'm managing my long-term side effects and have had a run of good physical health for the last few months, which is remarkable. I'm still working to determine what my next career path will be. In the meantime, I'm trying to enjoy the moments when I'm feeling good.

What I want other women to know: Cervical cancer is a preventable cancer. The HPV vaccine prevents cervical cancer, plus five other types of cancer. If we increase HPV vaccine rates, we can eradicate cervical cancer!

Have a Pap test and HPV test done so you know your results, then follow up as your doctor recommends. These tests are simple and can save your life. Having an annual pap test saved my life. I had normal pap results one year and a 4cm tumor on my cervix the next year.

How I will try to help others: I enjoy helping others locally. I've been that lonely cancer patient and survivor, so I want to help our community make connections with each other so no one is alone. I've hosted local meet-ups specifically for young adult or cervical patients and survivors. I've shared my story at local nursing conferences and spoke on several survivor panels. I wear a button on my purse every day that says, "Ask me about the HPV vaccine." And people do ask!

Any additional information you'd like to share: It took me a few years to start sharing my story publicly. And it's taken me five years to share it here on Cervivor. It's difficult for me to share my story because I don't want to be known as the girl with cancer. But it's also important for me to share my story because cervical cancer is preventable. I don't want another woman to go through the treatment I went through or deal with the same side effects that I'm now dealing with for the rest of my life. Cervical cancer is real and our stories need to be shared.