Erica’s death was a day that I knew would come but it hit me harder than anything I could have ever imagined. Erica and I also prepared Wylee for that day and days after Mommy dies.
Erica believed in Living Life despite her diagnosis. That spilled over to her family life and she made sure that Wylee had his own incredible experiences and adventures — even at such a young age. We started him with counseling five years ago, but not just sitting on a couch talking about feelings. We were going out and living life, taking on new adventures and challenges. One of Wylee’s first solo adventures would be at Camp Kesem three years ago.
Camp Kesem is a youth camp for campers who have parents suffering with cancer. Wylee had just turned eight and had only slept over at family members houses. This camp was a five-day over-night camp where members of Ball State University are camp counselors. Erica and I have nicknames from our First Descents trip, an adult cancer camp, so Wylee was accustomed to the nicknaming process and after persuasion he finally went with Coyote!
The Coyote that showed up at camp three years ago was so nervous but the Coyote I dropped off this week is so strong. He lives by the motto from his book, Living Life with Mommy’s Cancer, that “Everything Will Be Okay.”
Before this camp, I had now had the parental responsibility that would normally default to Mommy. I went through the packing list with him. I went to the store and bought all the things — flashlight, bug spray, swim gear, clothes and of course crazy socks! Erica would be so proud! I invested a lot more into this week than I normally do. It meant so much to me that Coyote was going to be surrounded by love, surrounded by other children that understand and that he could feel comfortable to have conversations that his school friends just don’t understand.
When I dropped Wylee off, I became teary eyed for the first time. If you knew Erica, she didn’t really cry. She never really seemed vulnerable and more often than not was controlling the situation or supporting someone else. I miss her.
I think about Erica all the time. I notice it most when I want to tell her about my day or to see what dinner plans we have. I notice even more when I don’t have something planned for an upcoming weekend. I miss her checking in with her friends Tamika, Tripps and Hugo. Getting the skinny on their lives and what they are up to. That person that I loved and slept next to every night is gone but my memories of her have not faded. I love and will always love Erica Lee. The presence she left are visible within our son, Wylee. He has her blue eyes, her smile and wit. Her legacy will continue on with the gifts she has bestowed upon me.
Erica may be gone, but I see her everyday in Wylee and it’s how I know that everything will be okay.
JR Stum is a Cervivor supporter who lives in Indiana. He is often proudly sporting his Cervivor shades around town. JR honors his late wife, Erica, by sharing her story as often as possibleand making sure that he and Wylee are out there Living Life.
18 years cancer free. I type those words and I feel so many emotions. I do not take lightly the magnitude of surviving 6,574 days beyond cancer.
Wow.
My eyes well with tears as I now say that aloud. I am grateful. I’m blessed. I’m lucky. I am honored. I am happy. I’m sad. Sad? I’m Angry. Angry? Yes, because there is a part of my heart that also aches for those that don’t get the opportunity to reach a milestone, such as this. It’s what’s commonly known as, “survivor guilt.” The guilt of “having made it.” But with cancer you’re always looking over your shoulder and are always just a cancer cell or more away from “what ifs.” I remember the enormous cloud of anxiety (and fear) that came with reaching one-year cancer free, and then five. Last year I had a scare. I didn’t know if I would still be cancer free for year number 18 but I am, and I am grateful. I’m also honored as I know that every single day, month and year matters. It’s an honor and a privilege to be 18 years cancer free.
I learned some time ago that I had to honor this time — not just this year, but every single day. And I do that in various ways. First and foremost, I do that by the way that I live my life. I live my life as if tomorrow is not promised. I live my life by enjoying my imperfectly perfect life. I live my life by giving thanks for what I do have and try hard to not worry about what I do not. I wrote an entire book about it. If cancer taught me anything it is to be grateful for life and I seriously find joy in living my best life beyond cancer. Cancer does not hold me hostage anymore.
I give back to the cancer community in many ways, but the biggest way is the nonprofit that I founded and lead, Cervivor. That work continues to inspire, empower and remind me that I am alive. It can be bittersweet, because while I honor this life beyond cancer, working in this space triggers past traumas of an emotionally and physically difficult time in my life. I’m also surrounded by women who are sick and who sometimes don’t survive this disease. That is probably the most painful part of this work. But, it has also become that catalyst of why I can’t abandon this work. Women still die of cervical cancer despite all the advancements that have been made. While we can prevent cancer in future generations we need more help for women who endure recurrent and metastatic cervical cancer today. I believe that we will make that happen.
When I first became a patient advocate, I didn’t know that it would look like it currently does today. I didn’t set out to become a patient advocate. It was exactly the opposite. I wanted to forget cancer and pick up right where cancer had come in and halted my life. But the harder that I tried to do just that; the more difficult it was to bury it while trying to navigate my “new normal”. I just couldn’t do it. I couldn’t reconcile how this thing had happened to me. How would I move forward with life. How do you live with the constant cloud of cancer hanging over you? I did decide to do something with “it” and “it” was to start sharing my story. I remember feeling that my story wasn’t as dire as some, and that compared to others it seemed that I had it “easier.” Why would anyone want to hear my story? AND who would want to hear about cervical cancer and me talking about my “coochie” 🙂 But there was this feeling deep from within that I just had to do it. I had no idea what I was doing, but I learned just by doing something day by day and looking to others who could mentor me. Being a patient advocate isn’t a cookie cutter thing. There isn’t a one way fits all type of advocacy. Being a patient advocate is about being committed to a cause. It’s being vocal. My cause is to end cervical cancer. And with each year of survivorship that has become even more personal than I could have ever imagined. I never thought that I would see myself here. But I am and I promise to make my survivorship count.
My goal has always been to connect and mobilize as many cervical cancer patients and survivors; as possible. Over the last decade it has also been to get those women (and their networks) engaged in active advocacy. The past 18 years, I’ve met some incredibly dedicated women and more recently we’ve lost a few that not only hurts personally, but also comes at a great loss to the cervical cancer movement.
That is what makes this cancerversary bittersweet. I want to yell from the rooftops that I AM 18 YEARS CANCER FREE (and I will), but I’m also sad to not be able to do the same with women like Jillian Scalfani, Lisa Moore, Brittaini Qadri, Lizzi Haas, Erica Frazier Stum and Laura Brennan. These losses hurt not only because of the loss of life, but because of the loss of champions for our cause. These women were giants. I miss them terribly. These women got it — in a big way. They were loud, vocal, passionate hadvocates. They understood the enormity of what we’re up against and the power of our collective voices to overcome it. I miss their willingness to be “all in.” I’ll continue to share their stories. Their voices will be heard.
This day will be about celebrating and a reminder that I am still here, but it is also a reminder at who is not. It’s bittersweet. But I’m focusing on the words of my friend, Dr. Sabrina Mikan, “Life is incredible! I appreciate each day I receive.”
Amen.
Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it. Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.
