patient advocate

The Gift of Creating Connections

My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups. 

From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny. 

One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor! 

Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them. 

That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!

As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity. 

So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart. 

I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.

Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.

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, MSW, Outside 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.