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.

Cervivor, My Teal Sisters

Imagine you are in the best shape of your life – all your hard work in all aspects of your life are paying off. You are living your best life. This was me on New Year’s Day 2017. Little did I know that all that work would make me stronger to fight what was soon to come.
January 2017 – I have an abnormal mammogram which turns into a biopsy that turns into a Stage 0 breast cancer diagnosis. Surgery occurs in April with radiation therapy until the beginning of June. I get through that with no issues and ready to get back to my “normal life”. With 3 radiation treatments left I was back to running. On a short run, I thought I was having UTI symptoms and went to an urgent care which lead to an ER visit that led to an advanced stage ovarian cancer diagnosis. You have got to be kidding. Lots of tests and appointments later – surgery and front line chemotherapy for 6 cycles to hopefully end in December. 

All my friends are very supportive and amazing but they none have gone through anything like this. I am grateful for them every day. My active running (race) plans are totally sidelined including the New York City Marathon the 1st weekend in November. During this time I am a sponge trying to soak in all the information I can about ovarian cancer, treatment options, and trying to find a way to get back to my “normal life”. Instead of the NYC Marathon, I find the Gynecologic Cancer Survivor Course with The Foundation for Women’s Cancer that includes a 5k in DC that same weekend.  A perfect distraction and an opportunity to learn more!

I arrive early to the seminar to pick out the best seat and maybe meet a few people. The people who sit at my table are lovely but serious and I don’t have a lot in common with them except for cancer. Then this high energy group of ladies walk into the room and sat down at the table next to me. My table didn’t have any empty seats and someone at the table had a friend still coming…perfect opportunity for me to change seats! I politely asked if I could join the ladies at the next table. They “warned” me that they were a rowdy bunch. (My thoughts were, PERFECT!) After introductions they treated me like one of the gang and I am sure that they were glad to have someone new with whom they could tell all their great stories. I learned so much not only from the sessions but from each of them and about their journeys. All of them are cervical cancer survivors from Cervivor!  While they have all have/had setbacks, they are all positive and always looking for the future.

During this weekend, I had an unexplained issue with both of my Achilles tendons – I could barely walk at one point. (It was later determined I was having an extreme reaction to an antibiotic.) I was now going to miss the 5K which was very disappointing. My new friends kept my spirits up the entire time. We hung out and walked together at the 1 mile event. We had a great time and the weekend was a success. Good information and now some new friends who understand and share my attitude about living with cancer.We have kept in touch since through Facebook and even some live chats. I have shared some of my obstacles with them even before sharing them with my inner circle of close friends. They understand.

Me in the teal hat! Photo courtesy of the Foundation for Women’s Cancer.

I was entered again into the New York City Marathon for 2018. With my recurrence and chemo treatments, my training has been awful and I decided to not run the marathon again. While disappointed, it opened my schedule for that weekend. I am now looking forward to attending the 2018 Race to End Women’s Cancer and Gynecologic Cancer Education Course in DC. I can’t wait to learn new information, run a 5k, and hang out with “old friends.”

Maureen Bowen, a Raleigh NC resident, is a Sales Product Specialist at Net Health and has worked in the healthcare IT field for over 20 years. When she is not working, you are likely to find her on a race course somewhere across the country. She has completed over 160 half marathons (all 50 states twice), 27 marathons, and 8 ultra marathons (races ranging from 31-100 miles). If you see her on a race course near you, please make sure to say hello!