Patient Advocates Matter

My cervical cancer story began when I was 24 years old. I had graduated from a local dental assisting program and worked in the field for only a couple of years when I was diagnosed on World Cancer Day 2015. I was completely devastated that cancer was happening to me! I mean, I knew I had a cervix but I was naive to the fact that I could get cancer “there.” And wasn’t it most common for older people, not younger people, to get sick? That’s when I realized how gravely wrong I was. Didn’t I just witness a high school friend succumb to cancer just a year before? She passed away at the young age of 27 and I truly thought that was going to be my destiny. I didn’t know anyone else my age that was going through it.

All throughout my treatment, I placed blame on myself for getting cancer, and even though I felt that deeply, I knew I wanted to do something more to help others. I wanted them to know about cervical cancer and how Planned Parenthood saved my life with their preventive screening services. I wasn’t sure how to start advocating or sharing my story, so I started spreading awareness by handing out little ribbons I made. (Some of my friends still wear them to this day).

If you would have told me back then I would become an award-winning patient advocate, I never would have believed you. You see, I’ve suffered from social anxiety throughout my entire childhood and adult life. It wasn’t until I was finished with cancer treatment that I found out about Cervivor, signed up for Cervivor School, and grew into the patient advocate I am now.

I have been involved with the organization since 2017 and have been presented with some pretty incredible opportunities – including employment by the organization. I started in 2021 when everything had been pretty virtual but this year, in-person events have started happening more frequently. Team Cervivor, consisting of Cervivor Founder, Tamika Felder, and myself, made the decision to attend the annual meeting of the American Society of Clinical Oncology (aka ASCO). As a first-time attendee, I can say I was completely blown away! This event was massive and full of oncology’s leading cancer researchers, clinicians, thought leaders, industry partners, advocates, and so much more!

We kicked off the week-long conference with a breakfast meeting in which we were able to connect with so many people – putting names to faces that we’ve been working with via Zoom meetings and emails for the last few years. We had a constant line of people waiting to talk with us about our work and hear our stories. It could have been the lack of caffeine but it really didn’t hit me until midway through that breakfast – the impact of our work as patient advocates is crucial in the oncology world. This made me even more proud to be working for the organization that gave me my voice.

Dr. Martina Murphy was one of these people who expressed just how important our work is including our Comfort Care & Compassion Program. She says, “Cervical cancer is a disease where we need so much more attention and work. The impact of this group is powerful.”

We continued to attend meeting after meeting and heard a consistent message across the board: we are dedicated to putting equitable patient care as our priority. We heard how patient advocate voices have a seat at the table and how we are leading engagement for some important topics across social media platforms. The realization hit me once again: We make a difference every day. Patient advocates matter.

Now, we made sure to celebrate a little while we were in Chicago too. The Sunday of the conference was a day recognized as National Cancer Survivors Day and we had A LOT to celebrate: Tamika was 21 years cancer free and was given the most exceptional gift and I was just days from officially being 6 years cancer free. We made sure to spend time with some friends and partners – both new and old, to eat incredible food, and to take time to unwind.

It has truly been eye-opening and so rewarding to see the kind of impact my story has had in the last several years. It’s been a lot of hard work and it’s taken time to see the results. But I know it’s not just my story in this. It’s the collective of our stories pushing for the same mission: to end cervical cancer once and for all.

Morgan Newman, MSWOutside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.

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