Reaching That First Big Milestone

Five years? How is it possible?

Five years. It seems like much longer yet it’s still so fresh in my mind. I have spent so much time processing through what happened to me – the good and the bad. Where there was darkness, there was so much beauty to equal it out. Cue the universe’s synchronicities and all the cardinal sightings.

Six years ago, I was diagnosed with cervical cancer for the first time at age 24. They found spots in my lungs after only being six months into remission. It was truly devastating! I was back in school full-time, working full-time, and trying to regain some normalcy.

But life had other plans for me.

I went through diagnostic test after diagnostic test to confirm it was cancer. Indeed, I would be facing my mortality once again. I will never forget the words my oncologist spoke to me after I received my first three treatments, “There are 7-9% of women who experience a complete interval response to treatment. You are one of those 7-9%. You don’t have any evidence of disease.”

I knew I had been given such an incredible gift and that I must not waste this second chance at life. What I didn’t expect was to find my voice as loud as I’ve made it. I stumbled across Cervivor through a hashtag on Instagram – I didn’t see this as a coincidence. I fundraised my way to Cervivor School in 2017 where I flew out to Delray Beach, Florida and learned how to use my voice in advocacy. The rest is history.

I’m still processing through many of accomplishments that I’ve experienced over the last five years including the idea that I’ve graduated three times despite my diagnosis and treatments, and that I’ve reached my first big cancerversary milestone. I’ve jumped at every Cervivor opportunity to be a part of change from cancer panel speaking opportunities to proclamation signings with Iowa’s governor for Cervical Cancer Awareness Month (January) to volunteering with the American Cancer Society Cancer Action Network (ACSCAN) to protect or improve policies related to cancer care. I also serve as a leader with Above and Beyond Cancer to make the Adolescent and Young Adult (AYA) community visible locally. Because of this work, I’ve been given three awards from Cervivor, ACSCAN, and Above and Beyond Cancer.

I know I wouldn’t be able to do this work alone, it takes a village to make a difference – to make change happen. It is exhausting and it can take a toll but it is also truly rewarding to see our impact taking place across the globe. I’ve met so many resilient and passionate advocates (along with their family members) – some are still with us while others have succumbed to their diagnoses. As a survivor and patient advocate, I had to accept and understand that this was going to be a common occurrence in our community but it didn’t make it suck any less.

However challenging this work may be, I wouldn’t trade this personal and professional growth for anything. Here’s to 5 years cancer free!

Morgan is a metastatic recurrent cervical cancer survivor, a 3x award winning patient advocate, and our Community Manager for Cervivor. She resides in Iowa with her boyfriend, Tony, their cat, Jeezy, and dachshund, Sassy. Morgan continues to advocate tirelessly in hopes her story can help others.

Tale of Two Ostomies

As cervical cancer survivors, our bodies undergo very traumatic changes. Chemotherapies. Radiation therapies. Hysterectomies. Biopsies. We also live with lasting side effects that continue to wreak havoc on our bodies and emotional well-being. 

Ten months after my cervical cancer diagnosis and radical hysterectomy, I faced an unfamiliar surgery — a pelvic exenteration. At this point, I didn’t feel like I had a choice. My cancer had metastasized and this was my only option. The choice was made for me.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

What is an ostomy?

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – and yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end, in my case, to the second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

Getting used to foreign objects attached to your body where waste pours out of is challenging to say the least. It was downright overwhelming at first. I cried every time I had to change my appliances and bags, which was every other day in the beginning. I felt helpless and angry. But as I physically healed things started getting easier and my frustration level decreased. I learned the best time for changing my bags, I learned what foods did and didn’t work with my ostomies and I learned there’s a whole online community for ostomy support and care. 

I also decided that since I was still here I wasn’t going to let my ostomies or my cancer dictate how I was going to live my life. I slowly went back to doing the things I always loved: hiking, swimming, traveling and Jazzercising. Taking back parts of my life was empowering and I felt strong again. Being able to still be me, to do the things that made me feel “normal”, helped me accept my changed body.

Most days my ostomies are unremarkable, just another body part. But I am keenly aware that my cervical cancer took away parts that gave me my womanhood and that I now redefine what it means to be a woman, a true Cervivor and someone who lives for more sunny days.

There are other women in our Cervivor community who are living and thriving with ostomies. If you are facing an ostomy surgery please know that you are not alone and that you have resources. We are here for you. 

Carol is our Lead Cervivor Ambassador and manages our Cervivor Meet Up program. She lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace. Carol & Cervivor have put together a helpful guide for those undergoing ostomy surgery. Click here to view.