Advocating For Myself: The Importance of Follow Up Care

When I was asked to write a blog for Cervical Cancer Awareness Month I happily accepted, but soon after the irony hit me. Awareness is something I did not have when it came to cervical cancer. Awareness is the single thing that got me into this situation in the hopes that no other woman is punished for their ignorance as I have been.

Jessica with her family

About 15 years ago when I was 21 years old, working two jobs and going to college full time, I had a pap test. I didn’t have it because I was being responsible for my health or anything like that, I had it because the only way to get birth control was to do an annual pap and I wasn’t ready to be a parent. I could barely care for myself. It came back irregular, and I was told they’d need to do a minor procedure called a colposcopy to make sure everything was okay.  The “minor” procedure was where an OBGYN goes in to clip a piece of your cervix off to biopsy. It definitely didn’t feel minor, and the memory burned into my brain forever as a “never want to experience that again” item along with wrecking my car and eating mayonnaise. 

Fast forward to three years ago and I had just moved to Spokane. I had decided to get a new birth control, so I went and found a new OBGYN (would there even be women’s health if we weren’t always concerned about being pregnant?). Five minutes into the appointment and I didn’t love the guy, which is saying a lot because it doesn’t take very much for me to love you. He was cold, direct, and impersonal. I get it, as a doctor you have to have a little bit of that in the field, but this individual was just not my cup of coffee (NOTE: I substituted coffee for tea here because I think all tea is dirt water). He told me I needed to have that horrible procedure again as a “precaution” because I had a strange-looking spot or two. Really, I wasn’t informed of how serious that could be, or what the spot meant, or anything. Now, I’m not saying it was his fault that I didn’t return after that day to get another colposcopy, but I do believe if things were explained a little more clearly, I would’ve returned to get my procedure. 

Doing another time jump, I had now avoided having another pap for two years, but hey, surprise, my fertility brought me back into the stirrups (the hospital kind, not the horse kind). My lab results had come back positive for HPV 16. There’s a lot of stigma with HPV and being someone who’s never had any sort of STI, I was horrified. But the truth is about 90% of people have HPV and have no symptoms for their entire lives. The problem with my HPV is the number behind it. That number is known to cause cancer. Finally, my amazing new doctor sat me down and let me know what that meant, and how important getting a colposcopy was. Unfortunately, because I was pregnant with my little miracle, they couldn’t take the actual sample of my cervix, but still wanted to schedule a couple “look and sees”. 

When my OBGYN took over the process, she did my first biopsy-less colpo. She even showed me what she saw and pointed to a couple white spots in my cervix that she thought looked suspicious but “definitely weren’t cancer”. Over the next nine months I did those two more times, both of which I had to remind my OBGYN about. Finally, when I was six weeks postpartum of delivering the world’s most majestic little angel baby, I again reminded my OBGYN about getting my colposcopy. It was horrible and I threw up when I got it done. 

Jessica & Kenny

When I got home that night, lying in bed with my husband and talking about our day, I suddenly got quiet. He asked me what was wrong, and I replied that I knew I had cancer. I was sure of it. Of course, he didn’t believe me. I don’t even think that possibility was in his mind, even when I said it out loud. But something innate confirmed it, as if despite having zero symptoms my body knew there was something inside of me that wasn’t right. Sure enough, one cone and PET scan later it was confirmed, Stage 3 cervical cancer. 

In retrospect, I know it’s cliche but “everything really does happen for a reason.” It’s weird to say, but I am glad they didn’t catch my cancer earlier. I am glad because usually, the treatment for stage 1 cervical cancer would be a radical hysterectomy. If my cancer had been caught earlier, I would’ve never had my son. I would endure 1000 cancers for him to be born. That being said, if I would’ve had my procedure done three years before, I would likely have caught all of this before there was cancer. So, really this just boils down to taking responsibility of your own health. No one will do it for you. And just because you “feel” healthy, doesn’t mean there isn’t something lurking inside. If you take away anything from this, take the initiative to get an annual pap, and further, if something is irregular, take the follow-up. Be aware of this extremely horrible but preventable disease.

Jessica lives in Spokane, Washington with her husband, 5-month-old son Kenny and 6-year-old step daughter Kyla as well as their two dogs, Cane Corso Bruce and Boston Terrier Elvis. She works as a large enterprise senior account executive for Gartner. In her spare time, she enjoys snowboarding, wakeboarding, golfing, showing her dogs in conformation, riding her horse and spending time with her wonderful family.

Bringing Bigger Dreams to 18

“Your birthday is the beginning of your own personal new year. Your first birthday was a beginning, and each new birthday is a chance to begin again, to start over, to take a new grip on life.” — Wilfred Peterson

Cervivor, Inc. is celebrating eighteen years as the leading voice in cervical cancer patient advocacy. We have been at the forefront of change, of dismantling stigma, and of pushing toward a future free of cervical cancer. Cervivor has also been a place of connection and support for so many affected by cervical cancer. It hasn’t always been so apparent as this community has grown and evolved over time.

When Cervivor founder and chief visionary, Tamika Felder started this organization, it was because she knew there was power in a collective and knowledgeable voice. She knew that others like herself needed a community and a purpose that gave back what cancer tried to strip away. A community that refreshed our strength and resilience skills to overcome the trauma we have experienced. She strategically used the tools she possessed as a lifelong storyteller and compassionate change-maker. Tamika created, as she always says, something she didn’t have as a young adult and cervical cancer survivor.

What started as Tamika & Friends, Inc., supporting cervical cancer survivors and their families, evolved and grew because Tamika knew the future held endless possibilities for empowered and educated patient advocates who wanted to show the world that cervical cancer has a multitude of faces and backgrounds. She knew that by simply sharing our cervical cancer experiences, people would listen and that meant change was possible. We are going to officially put an end to the shame and stigma behind a cervical cancer diagnosis and hopefully one day to the disease itself.

Eighteen years later, Cervivor has a global reach and our partnerships across various health disciplines brings our work of cervical cancer awareness, prevention, and support to even more audiences — policymakers, researchers and medical teams, educators, and even The White House.

Cervivor continues to support newly diagnosed cervical cancer patients, as well as create spaces for those seeking to connect and those wanting to add to our advocacy footprint. We have come so far since the early days of our HPV/House Party of Five but still have more work to do. We have more lives to help save and honor the lives of those who are no longer with us through our work.

We will continue on but we need your support. Please continue to be visible as our supporters, advocacy partners, friends, and family. We cannot do this work alone. Start by donating $18 today in honor of Cervivor’s 18th birthday.

Lastly, let’s sing a happy birthday tune to our beloved organization, because #WeAreCervivor!