The Power of Community and an Exceptional Gift

⚠️ This content may be triggering for some. Includes infertility and pregnancy. ⚠️

Dearest Cervivor Community,

Happy Survivorship Month! No matter where you land, it’s a reason to celebrate. Even if you’re just celebrating today. We all get so caught up in milestones. It’s hard not to. Comparisons are everywhere and we all just want so much more time. But what I’ve learned over the years is that each new day is really the greatest gift. One day at a time.

Beyond National Cancer Survivor Month, I’ve got a bunch of reasons to celebrate. June is also my birthday month (yay for birthdays!), and today marks the anniversary of my radical hysterectomy at Johns Hopkins in Baltimore, Maryland.

Twenty-one years! I remember when the hospital called to confirm my surgery. I was 25 years old, shocked and terrified that I wouldn’t get to see my 26th birthday. I pleaded with the scheduling coordinator to schedule surgery after my birthday. I thought, if this was it, I was at least going to celebrate one last time. But I didn’t get my way. My radical hysterectomy to rid my body of the cervical cancer tumor that was taking over was scheduled for June 14, 2001, at 7 am. I walked myself into the operating room, got up on the table, and woke up hours later – forever changed, both physically and mentally.

I didn’t know then how my own diagnosis with cervical cancer would play a role in my own life, as well as the lives of others. I couldn’t even imagine my current role as a patient advocate, and leader in the cervical cancer patient advocacy space. It certainly wasn’t a goal of mine, but I just created what I wished I’d had. This “work” has been life-changing, fulfilling, difficult, triggering, and yet one of the greatest joys of my life. I’m proud of what we’ve built together as a community. My dedication to our cause is greater than ever before.

The last few years have been challenging to say the least. We’ve weathered so much together, and now we can include an ongoing pandemic to that list. During the pandemic we kept the community going with virtual events. In fact, it was during one of those virtual events that I met someone so very special from our community, Ginny Marable.

Ginny joined us for several events and was even a speaker at our September 2020 Cervical Cancer Summit. While I was learning more about Ginny, unbeknownst to me, she was also learning more about me. She saw my true desire to be a mom, and the heartbreak that it would probably never happen due to my hysterectomy.

Fast forward: Ginny and her husband Sean began their path to parenthood via a gestational carrier. She shared their beautiful journey with us as a community, as well as on social media. When her twin boys were born, I was so elated for them, but if I’m honest, I also felt that familiar ping that I would never experience that moment. But I was just so happy for her, that feeling of sadness was fleeting.

Another short fast forward: Ginny reached out to me for a phone conversation. Never in my wildest dreams could I have known how that call would have changed my life. I mean, I haven’t even met Ginny in person – only through our virtual space. So, I’d like to make June even more memorable by sharing with my Cervivor community at large that Ginny is giving me an exceptional gift that I never imagined could be bestowed on me – motherhood.

Ginny has simply taken the power and love of this community to an entirely different level. We shared our unique story with Insider and you can read about it here.

My hope is that you will feel all the love, and our “Cervivor Spark”. But simply, thank you, Ginny!

With Love and Gratitude,

Tamika Felder
Chief Visionary, Cervivor, Inc. 
21-year Cervivor
Mom-to-be

Clinical Trial Awareness Month: Cervical Cancer Needs YOU!

That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.

While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.

You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.

We said it before:

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker

It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.

This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources:
https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials
https://www.clinicaltrials.gov/ct2/home

If you have experience with a clinical trial and want to share it with us, contact us at info@cervivor.org.