How my story begins: I had been going to Planned Parenthood for preventive visits since I was about 14 years old. In 2014, I delayed my visit by a month or so because I was experiencing some abnormal bleeding. I didn’t think anything of it because I’m no stranger to off-cycle bleeding. Nevertheless, I made sure to keep my appointment regardless of bleeding or not.
For the first time, I received abnormal test results back. Again, I wasn’t as concerned because most of my friends have had something like this happen and they turned out fine. The clinic scheduled me for a colposcopy. They tried their best to attain biopsies but I was hemorrhaging and in such excruciating pain. This was not typical by the looks on their faces. They decided to stop the appointment and they referred me to a gynecologic oncologist. I didn’t connect the dots as to what that would mean for me.
On February 4, 2015, I went to my gynecologic oncology appointment by myself. I was 24, what could possibly be wrong?! After a pelvic exam and an in-office biopsy, the oncologist asked me to meet him and his Physician Assistant in the conference room. It was then that he flipped open a women’s health catalog and pointed to a teal-colored page and said, “I’m sorry Miss Newman, but you have cervical cancer.”
I was your typical 20-something who loved to go out and be social with her friends every weekend. I was going through a lot of transitions in my life like moving into my own studio apartment after living with my sister for a few years. I was finding my footing after being at my job as a dental assistant for a few years. I was in a new relationship with someone who seemed to match my interests and I was also in the early stages of going to therapy for the first time to address some anxiety and depression. I felt like things were really moving in the right direction.
After I attended therapy for several months, I made the decision to go back to school for social work because I wanted to do something more meaningful with my career. So I started taking classes at the local community college to advance my career in social work.
Life before my diagnosis: I was your typical 20-something who loved to party with her friends. I was working at a good paying job and I had made the decision to go back to school for social work because that’s where my true passion is.
How I felt after diagnosis: I was definitely in shock. I truly didn’t expect that I was going to be told something so serious but I was wrong! I never went to another appointment alone after experiencing that. After the shock had worn off, I was extremely sad. I thought my life was essentially over at that moment. I didn’t know how to really handle everything so I took a couple of days to sink in and process it. Then I switched gears and was ready to rid the cancer from my body.
Telling my family and friends: This was ultimately the hardest thing for me to do. I was afraid of how people were going to react. I remember standing in the skywalk of the hospital not really making much progress towards my car as I called each of my parents first then my sister. I was crying hysterically until I could hear their familiar voices.
After my family was notified, I had to call my boss to let her know I wasn’t going to be back to work that day and that I didn’t really have many answers or a treatment plan. I also had to go home to my boyfriend at the time and tell him that all the dreams we discussed just a couple of nights before would be gone. I told my best friends and then made an announcement on social media the day after for everyone else to be “in the know.”
My treatment: The first time I was diagnosed, I underwent five weeks of chemotherapy and six weeks of external radiation, as well as 4 treatments of vaginal brachytherapy (internal radiation). I was considered in remission on August 10, 2015, but when I went back for a 3-month check-up and they discovered spots in my lungs. I would need to go back for more testing which consisted of a couple of biopsies. The doctors had some difficulties obtaining a sample from the first CT needle-guided biopsy so I had to go back for a second, this time it was an endoscopic biopsy. They concluded the spots to be the same cervical cancer cells.
I decided to seek a second opinion with a new provider who was located 3.5 hours away but I’m glad that I did because I don’t believe I would still be here today had I not. We decided on a regimen of cisplatin, paclitaxel, and bevacizumab. I went through many trials and tribulations receiving this chemotherapy every 3 weeks. My neutrophils got so low that treatment was extended. I lost weight that I couldn’t afford to lose and all of my hair. After 3 treatments, I was scanned and they were NED, completely clean. I, unfortunately, had to go through 3 more treatments as a preventive measure but the results of the next scan remained NED.
How I felt after treatment: It’s been a long road of recovery. I was frustrated with not gaining weight back right away. I was happy that I didn’t have to have any more treatments with how sick they made me.
I finished treatments in August of 2016 and started my undergraduate program just two weeks later. Sitting at a desk for hours at a time was really hard on my body but I had an incredible instructor who understood what I was going through. She often checked on me to make sure I was okay.
One month after treatment ended, I had a 5-day hospitalization. I thought I was having a bowel obstruction. The doctors concluded it was a colitis flare and that I would need to watch what I ate. It was a really scary and painful experience!
What was most difficult for me: Realizing the seriousness of the metastatic disease. I wasn’t ready to die. I had lost so many family members already to this kind of disease. There has always been and will more than likely always be a fear that the cancer is going to return.
Another thing that remains difficult for me is that I expected to go back to my old self as soon as cancer treatment was over but what I didn’t realize is that the ramifications of cancer would be a lifelong process. I now deal with side effects that are not curable but manageable.
What I did to help myself: I allowed myself a couple of days of reflection after appointments which I think is crucial.
I would be remiss if I didn’t mention just how incredible my support system was. I am forever grateful for those who took the time to talk with me, send me cards, bring me food, and helped clean my apartment when I needed it the most.
Throughout my whole treatment, I wanted to do something more - to share my story, to advocate so others didn’t have to go through this horrible experience. I made little teal ribbons which eventually were teal and white ribbons to be more accurate and handed them out everywhere I went. I wanted everyone to know that cervical cancer existed because inside I felt all alone.
Another thing I did to help myself if I felt pent-up emotions, would be to write in my journal. Creative outlets were by far a benefit!
My life after cancer: Right after I finished up my recurrence treatment, I stumbled across Cervivor due to a hashtag. I thought it was so clever to use “cervical” and “survivor.” The post mentioned a patient advocacy retreat and listed off the learning objectives of learning the latest about HPV and cervical cancer, how to share your story and connect with others who get it. This aligned with my values and what I wanted to accomplish. I signed up and fundraised my way to Delray Beach, Florida and the rest has been history.
I graduated Cervivor School in June of 2017 and went back home to Iowa to start working in my local area as a Cervivor Ambassador. From that stemmed SO many opportunities that have helped me grow. While attending my second Cervivor School in Cape Cod in 2018, I was recognized by the Cervivor organization and was awarded the title of Cervivor Champion. The next two years after Cervivor School, I continued to nurture those existing community partnerships and kept on building new ones. It was then I was recognized with two more awards from two other organizations. I still couldn’t believe it and to this day I am so proud of how far I have come. This leads me into graduating from the University of Iowa with a Masters in Social Work (MSW) and bound to a Code of Ethics to serve others.
One quote I heard at Cervivor School that will forever stick in my memory is “Cancer is a gift wrapped in barbed wire.” I couldn’t agree more. After cancer, I am a happier, more grateful, and more optimistic person. I try my best not to take things for granted and I look forward to every single day!
Where I am today: Heading into 2022, I am going on 6 years with no evidence of disease and I now work for the organization that gave me my voice after cancer. I continue to share my story and volunteer for various organizations.
What I want other women to know: Please know that you are never alone and cervical cancer is NOT your fault!
Another thing I've come to realize since getting involved in patient advocacy is that the mission is greater than just my own personal story. Our stories are powerful but they are so much more as a collective voice. We need you to share your story too. It truly makes a difference!
How I will try to help others: I’m grateful for my job with the organization - to understand the work that is being done behind the scenes, to be able to sit on various advisory boards and research teams, to maintain and develop our programming, to support others impacted by cervical cancer, and to meet our partners and to hear their passion in the work that they do. It is all truly rewarding.
Every time I am connected with someone in our community, every time I am connected to a family or friend honoring their loved one who has passed from cervical cancer, every time I see those statistics of diagnoses and cervical cancer disparities, I am reminded of just how important this work is. It keeps me humbled yet motivated for the next thing. I cannot wait to see what else the future holds for our Cervivor community and organization.