Creating Patient-Provider Synergy

I’ve always been a person that believes communication is of the upmost importance. When I was a child I suffered from terrible social anxiety. It prevented me from asking for things, yet somehow my parents always knew how to respond in a way I needed most. As I grew older, I realized how important communication was in building and maintaining new friendships and relationships.  

When I was diagnosed with cervical cancer for the first time at age 24, communication continued to be such an important factor in the patient-provider relationship. It was difficult with all of the emotions involved. There was a lot of fear of the unknown and tensions rose. Most of the time, I was at a loss for words and didn’t know what kind of questions to ask. The physician assistant was the liaison to my oncologist and she eased a lot of my worries. I felt that I was naïve, and I took the stance of assuming that my oncologist knew what I was going through. I was wrong. As I sit here and reflect on everything now, I believe he was under the assumption that I too understood everything as well.

What I didn’t anticipate was the thought of cancer being such a complex and life altering disease.  I became frustrated and angry whenever something didn’t go as expected. My defense mechanisms forged their way between my oncologist and me. It took me a couple years to figure out that I was indeed a human and not a superhuman like everyone thought I was. The ease of communication wasn’t always there. I felt stuck…a lot.

It wasn’t until I went through a metastatic recurrence that I really started advocating for myself and asking the questions that came to fruition. I felt it was the only way to finally start feeling control over my destiny and I was right. Even though it was the most feasible thing for me to do, I decided to seek a second opinion with a different oncologist nearly three and a half hours from where I live. I’m so thankful I did. 

My new oncologist was extremely receptive to my anxious, fear-filled questions. He took nearly twice the amount of time with me just to confirm we were on the same page. When I left his office, he even followed up with a phone call. It really opened my eyes to the fact that this one individual is seeing an ungodly number of women from all over the world and he was still able to treat each one of us as if we were his top priority. I will never forget it!

Being a young adult cancer patient was tough. I turned 26 and I was essentially booted off of my mother’s insurance. I was paying a hefty premium, co-insurance, hotel and gas in order to receive the care I never had before. It became unfeasible and at the time I didn’t know where to turn for resources. The ones I thought I could seek had nothing left to offer to me.  

I again started seeing an oncologist close to home and again, I faced a communication barrier. My post treatment side effects were taking over and essentially degrading my quality of life. Had I not been in school for social work at this time, and involved in patient advocacy, I would be too scared to tell this provider that he was not suitable to my needs and that I would be going back to my oncologist located three and a half hours away.  

Once I went back to my previous oncologist, my issues were addressed immediately. I had referrals to address my lymphedema, gastrointestinal issues, hormone replacement therapy and osteoporosis. It was an overwhelming number of tests, but I received the answers I was seeking and my symptoms improved.

I have come to find out that I am a reflective person and frequently process through life events both large and small.  It’s how I am able to cope with everything. One thing that being a patient advocate has taught me is how to tell my story, to know what I need, and how to ask for it.  I must also give credit to the skills I have obtained and utilized as a social worker – I’ve learned where I can go for services and support.  But even though I possess this knowledge, there are still a ton of things I don’t know and don’t understand. There are also several questions I find I’m still asking myself.  One in particular I find myself coming back to: I wonder how many women have been in my position, who are uninformed of all of their options and resources, or are too scared to ask for what they need from their provider(s). This is a strong indication of how important communication skills are for both the patient and the provider.

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and the 2018 Cervivor Champion recipient. She lives and works in Winterset, IA as a dental assistant turned office manager, and she has the sweetest dachshund named Sassy. Morgan is currently in the middle of finishing her Masters in Social Work with the University of Iowa. She continues to advocate tirelessly in hopes her story can help others.

I Miss Her Everyday

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 possible and making sure that he and Wylee are out there Living Life.