Making My Survivorship Count

Coretta Scott King once said, “The greatness of a community is most accurately measured by the compassionate actions of its members.  Now, imagine a community built brick-by-brick by the survivors of trauma; a cancer diagnosis. 

When we look around, we see many familiar support groups and organizations. Even if we’re not personally affected, we understand that these are tiny communities ready to support individuals with similar afflictions. 

Then, there are patients and survivors who are devastated by a cervical cancer diagnosis and, when they emerge from the darkness of life-altering surgeries and brutal treatments, they are hard-pressed to find that beacon that heralds them to the arms of other cervical cancer survivors.

What if there was a community of open arms that also provided you with the voice and the feet with which to make your survivorship count? To make a difference so that others are imbued with knowledge and the inner permission to self-advocate. Fortunately, an organization like that exists in Cervivor

Although my staged cancer story began five years ago, my attempts to prevent that cancer began 26 years prior when I was treated for high-grade pre-cancerous cells. Unfortunately, at the time, there wasn’t a lot of information out there about cervical cancer, other than this cancer is related to HPV. I was 46 when I found out that something I’d dealt with as a young woman was back to seriously try to end my life. 

It wasn’t just about letting people know about their Pap tests anymore, it was also about dispelling the stigma that came along with a below-the-belt cancer. As advanced as our society is, we still, in some ways, carry provincial attitudes and morays regarding the female reproductive system. My goal after coming out of treatment and finding a more distinct voice was to educate not only my local community about cervical cancer, but also to break down barriers. These stigmas can lend a hand in the disproportionate amount of needless suffering due to this cancer.

Lorie at Cervivor School Nashville

My advocacy is a calling that I feel obligated to answer. In these last five years, I’ve met with people one-on-one, in groups, and online to facilitate educational forums on HPV, cervical cancer, and preventative testing. I’ve held fundraisers and donated my time to research organizations. I serve as a cancer mentor for the newly diagnosed to help them in their journeys with cancer. These mentees seek guidance from established patients who’ve been through it all. They are matched with mentors who closely align with their needs. During this mentorship, the mentee feels informed, supported, and more at ease with their treatment modality. 

Along with mentorship, I also share my story through multiple social media platforms. I have shared my cancer experience with several cancer centers to provide a patient perspective for the oncology professionals and to provide hope for the oncology patients who see my videos and read my story.

As a Cervivor, my active intention is to broaden the reach of my voice by advocating about the HPV vaccine because, ultimately, we could eradicate HPV-related cancers through vaccination. I love that our Cervivor community aligns with my passion to reach as many people as possible. We do so, not only with compassion and kindness, but also by lending strength. 

I am but one person and I have a story. Together, we are a village and our stories are powerful.

Lorie Wallace is a five-year cervical cancer survivor and recent Cervivor School graduate. She has dedicated her life to cancer advocacy and support by facilitating community education forums on cervical cancer and HPV awareness. Lorie also serves as a cancer patient mentor for the newly diagnosed and for caregivers of cancer patients. She is a fur mom and a wife, who enjoys painting, music, and is a lifetime student of history.

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.