Experiencing Cervivor School as a Cervivor Follower

Two years ago, I was reading an article during Cervical Cancer Awareness Month, about Tamika Felder and her organization Cervivor. I could not believe there was an entire group dedicated to cervical cancer awareness! I followed the link to Cervivor.org and read story after story of women like me. Women who’s bodies and lives had been forever changed.

As I read through the site, I saw something called Cervivor School: “A live event for anyone looking to become more involved in the cervical cancer movement”. This sounded perfect for me – I was already talking none stop about my cervical cancer, why not find out how I could make a difference. I happily submitted my Cervivor story and I was determined to get myself to the next Cervivor School.

About two months later, I received an email that Tamika was going to be at an event in San Francisco and would I be interested in attending as a Cervivor. I jumped at the chance to meet other Cervivors’ in my area, as well as meet Tamika herself. Along with Tamika, I met fellow Cervivors Cindy and Curtissa. Our stories shared similar threads and we seemed to have the same desire to change the perception of cervical cancer.

That event lead to another amazing event, Stirrup Stories. I saw firsthand Cervivor’s impact in the community. The outreach Cervivor does to educate and bring awareness to a cancer that gets very little positive acknowledgment. Fourteen of us shared our very personal stories. We shared with the audience that HPV and cervical cancer has a diverse voice, and the tears and cheers filled the theater that night.

Having been a part of Stirrup Stories, I knew that Cervivor School would be just as powerful. But I would have to wait a year before I could get to a Cervivor School. When I finally packed my bags and headed to Delray Beach, Florida for Cervivor School 2017, I was jazzed to finally be a part of this experience. I was really feeling like a Cervivor.

I got to meet women who I’d connected with through social media. Women who’s stories I knew and that were so similar to mine, that I found myself at ease almost immediately. We sat together in a conference room for four days, creatively writing, getting artistic, listening to impactful speakers and learning how we can take our HPV and cancer stories to the next level. Oh and the laughter! As a cancer patient and survivor, it isn’t always easy to laugh, especially at our cancer but Cervivor School is a safe, non-judgemental environment where we could just be ourselves.

After Cervivor School, I have refined my story and my purpose. I now have resources to support my HPV and cervical cancer advocacy as I reach out to my community. Like my Cervivor sisters, we want to be the last generation to face HPV and cervical cancer. We want our stories to matter. We want our Cervivorship to be impactful.

Apply to attend our upcoming 2018 Cervivor School here. Read more about my story here.

Brain Surgery for Cervical Cancer?

Warning this post contains medical photos and talk that may not be for everyone.

Yes… it’s not common, but true, cervical cancer can metastasize like any other cancer. I was originally diagnosed, with stage 1b1 cervical cancer 2 years ago. I had an almost 10-year history of normal paps. Please, get your well-woman exams, vaccinate your children, I beg you, no one should go through this.

My whole brain radiation setup includes a very tight hard plastic/mesh mask to hold my head perfectly still. The radiation itself is quick (~10min), thankfully, the mask isn’t very claustrophobic. l have 3 weeks of daily radiation to keep the small lesions in check.

This all started with a swollen lymph node in my clavicle a few months ago, it came up during my routine oncology follow up, after a biopsy, it turned out to be recurrence; of my cervical cancer. I started chemo and after only one round, the node pretty much disappeared. Good news my oncologist was ecstatic. I decided to seek a second opinion at MD Anderson in Houston they agreed with my treatment plan, which was a relief. They are also going to genetic test my tumor. This is where the plot thickens. While there I developed vertigo and had a hard time moving my head or keeping my eyes open without the world spinning. And my balance was terrible, then I started vomiting with small head movements. Somehow we flew home to Portland, Oregon from Houston thanks to United for helping with wheelchairs and pushing me around airports so my husband could tend to our 2-year-old.

Hospitals are boring, so good friends help make sure your nails still look good!

The next day, first day home, I was worse, my husband went to work and I rolled over in bed and vomited all over myself. I called him, he rushed home cleaned me up, and I rested, he’s a primo man. I got worse as the day went on, called a friend to sit with me, not many people would want to hang out with someone that vomits every time they move. After she arrived we decided 911 was in order, I couldn’t move without emptying my stomach contents. Those poor paramedics. Getting me into the ambulance was a bit like the exorcist, but not pea soup. I just wanted the world to stop spinning.

Benign vertigo was the original diagnosis but a neurological exam revealed weakness on my left side so they decided to do an MRI. The ER doctor with the results was waiting for me before I made it back to my room after the MRI, not a good sign. I had a <3CM tumor on my cerebellum causing inflammation, likely the cause of my issues, they also found multiple smaller lesions in my brain, they had already contacted the on-call neuro team. I was moved to the neurological ICU, I had 2 options, hit steroids hard with hope that controlling the inflammation will lessen the vertigo symptoms or major brain surgery to remove the tumor on my cerebellum, we chose to get it out.

My “brain drain”.

The next 24 hours are a blur, I remember little. The surgery was successful, they got it all, I had an amazing surgical and nursing team. My primary oncologist even sat in on the surgery. I came out with a six inch, 15 stitch incision on the side of my head and an EVD (external ventricular drain) Google it if you’d like to learn more, but I just called it my “brain drain”. It had to be aligned at all times to my ear to drain cerebral spinal fluid and prevent too much pressure on my brain so its maintenance/care was a constant box to check by my nurses. I spent a week in neurological ICU, regaining strength, practicing walking and getting my balance back. Fortunately, the surgery brought sweet relief of my symptoms, but with brain surgery comes new issues, I have left sided ataxia/weakness. Walking was challenging initially, I needed assistance to do everything including going to the bathroom. I am walking independently now, I can do most daily self-care tasks, including showering, but recovery is tough. My fine motor skills still need work. This took about twice as long to type as pre-surgery.

My son, Wayne playing doctor. The wonderful hospital provided us with toys for my son to play with while he visited.

So my next step, I’ve already started whole brain radiation to control my brain lesions, they are too small for focused radiation. I’ll restart chemo, Carboplatin/Taxol/Avastin when radiation ends, October 18, the day after my 34th birthday. I’ll likely remain on Avastin, indefinitely. I’ll also start neuro-physical therapy and occupational therapy soon. But I’m on the road to recovery!

Learn more about my story here: http://cervivor.org/stories/lizzi/