One of the first people my nurse at the hospital put me in touch with was a young survivor named Shannon Routh. Shannon is a six-year clear cell survivor and has devoted her life to helping other women with this disease. I love this girl. First of all, she was so intent on refusing to let cancer control any more of her life than absolutely necessary, she renamed it. Out with the “c” and in with a “k,” complete with pretty little squiggles on either side because, c’mon, a woman kicking {k}ancer’s butt deserves to have as much prettiness around her as possible. She’s definitely my kind of woman.
Here’s a little background on Shannon’s story: In 2009, at only 32 years old and after experiencing abdominal pain, Shannon received her diagnosis: stage IIa clear cell carcinoma, which is rare for someone so young.
How did she handle that? Within two weeks of diagnosis, she had a radical hysterectomy. A few weeks later, she began six rounds of chemotherapy. Then about a month after that, she founded a nonprofit and named it Teal Diva.
Teal Diva’s mission is “to celebrate victories, honor memories, educate the community, empower women and fund diagnostic research for gynecologic {k}ancers.”
Think about that for a minute: Two months after her diagnosis, she went out and started a nonprofit! I mean, I’m a go-getter but two months after my diagnosis, I was still recovering from major surgery and adjusting to post-surgical menopause after a radical hysterectomy (more on that later). I never gave up my passion for our own existing foundation, but I’ve just been incredibly awed by Shannon’s unwavering resolve.
Shannon is amazing, and I’m thrilled to introduce her to you.
Sherry: Talk to us about Teal Diva.
Shannon: The nonprofit has evolved with me and my journey. I am at my best when I feel good and I hope Teal Diva personifies that. Our hope is that women are encouraged by the stories and information shared through Teal Diva and make the journey a little less scary.
Sherry: I’ve talked about my own “new normal.” What does that term mean to you?
Shannon: After treatment, you will hear things like “the new normal’. I don’t know what that is. I want to live the best me and I am figuring that out daily. I push myself to overcome fears and be better. Better mentally, physically, emotionally, spiritually.
I don’t claim to have it all together or to be an expert. I am just someone who was diagnosed with a disease and decided to use my voice. I am looking for healing and assume others are, too. If that is the new normal, than I invite all to join with me in being the best they can be for their own happiness.
Sherry: Tell us about “{k}ancer” and “thrivers.” How did you choose these terms?
Shannon: The spelling of {K}ancer stems from advice I received from a fellow {k}ancer survivor. She gave me a book by Kris Carr, “Crazy, Sexy Cancer” and told me not to dignify the word by spelling it correctly. She told me when you have had {k}ancer, you can spell it any way you want. And so throughout treatment, I did spell it multiple ways.
Afterwards, I had people tell me how empowering it was… and so, it kind of stuck. We incorporated it to the website. We have some haters. We have had people count how many times we spelled it wrong…but to them I say ‘thank you for reading through our entire site. Please spread the word about ovarian {k}ancer.’
Sherry: What do you want women to know about you and why you began the site?
Shannon: I was diagnosed at 32 years old and had never heard of ovarian {k}ancer. Not only was I told I had {k}ancer, I was also told I would never bear children. I was just shy of my three-year wedding anniversary and we had not had children.
Throughout my treatment I longed to meet others who could relate to me and all the things I was going through. I am pretty upbeat and positive; I looked for events that reflected that with little luck in finding anything close in proximity. I wanted to feel good and have something to look forward to. I wanted to know I could be celebrated in my community and my journey. I wanted to hug someone and say, “I know what you are going through,” and I wanted to be hugged and have the same said to me.
I’m pretty good with fundraising and wanted an avenue to raise funds. I couldn’t find what I needed and so I created it: Teal Diva.
Sherry: Share your advice for me and anyone else diving into ovarian {k}ancer advocacy.
Shannon:
- Take time for yourself.
- Have balance.
- Work with others.
- Stay true to your message.
- Be relevant. Be different.
Sherry: What advice do you have for someone just beginning this journey as someone fighting ovarian {k}ancer or another gynecological {k}ancer?
Shannon:
My advice to someone entering this journey would be to:
- write everything down;
- try to have a buddy at all appointments and treatments (a second set of ears);
- try not to research too much on the internet prior to treatment. I know this seems weird. But much of what is online are outdated materials. Statistics. You are not a statistic. You are: (insert name); and
- focus on each day and what you need to do to get through each day. As you continue along your journey, your questions will reflect your journey.
Sherry: What do you know NOW that you didn’t know when you were diagnosed?
Shannon: Well, I know about a disease called ovarian {k}ancer. I had never heard of it prior. And I assumed it was an older woman’s disease. I know that the symptoms are vague. I know there is not a reliable screening test. What we do have in place does not test everyone and provides a lot of false positives if it even detects anything on that person. I know that I need to be my own advocate. I know who I can count on to be there at my roughest moments. I know there are other people like me.
