How my story begins: In 2014 I had been experiencing some spotting and bleeding but wasn’t concerned since I had never been “regular”. I had always made sure to get my screenings, but I decided I should reach out to my OBGYN and schedule an appointment. After my exam my doctor confirmed that he was concerned and wanted to do outpatient surgery as soon as possible.
That was a Thursday. I was in the hospital on Monday. After the procedure I was told to rest for 24 hours. I was prepared to go back to work that day when my doctor called and asked me to stop by his office for my results. Honestly, I still never suspected anything major let alone cancer, but the biopsy confirmed I had early-stage cervical cancer.
Within two days I was meeting a surgeon to schedule a radical hysterectomy. In addition to the major surgery, I had five internal radiation treatments. I was cleared within three months. I started to live my life as I normally did thankful that it was caught early, and I was able to get it removed. In fact, I traveled to Asia to visit my sister two months after my surgery. I was clear for almost three years, still getting my screenings.
In April of 2017 my leg began to swell. I thought it was a stress fracture, or a spider bite that caused it but decided to get it checked out at my local urgent care unit. They initially thought it was a blood clot in my leg and sent me to the hospital for testing. The first test came back with no indications of a DVT, but the ER doctor was concerned with some things he saw in my bloodwork. He ordered more testing, and it was discovered I had a mass in my pelvic wall.
In a whirlwind I was back to the specialist in two days who scheduled a biopsy and confirmed reoccurrence of my cancer. I was in complete shock. The tumor was in a place that they could not operate so I stared seven weeks of radiation and six chemo treatments. Once again, the PET scan cleared me that October, but my oncologist started CT scans every three months. Within a year it had returned and metastasized, so I was once again facing a cancer diagnosis and this time I was Stage 4.
My oncologist recommended going to a facility that may have alternative treatments or trials, so I traveled to MD Anderson in Houston, TX and met with their team. I was first on an aggressive chemo regime that lasted about seven months until my platelets bottomed and I ended up in the hospital for two weeks. My MD Anderson team and my local oncologist decided to change my treatment since my body could no longer handle the heavy chemo. That regimen didn’t hold the cancer at bay and my pelvic tumor returned, in addition to my metastatic cancer still being active. I was running out of options until my MD oncologist suggested I meet a doctor in their Targeted Therapy Department and investigate a clinical trial. In August of 2019 I entered a Phase I clinical trial that I am still a part of today.
Life before my diagnosis: I had an incredible career in banking that I loved. I enjoyed traveling around the world visiting my sister in both Europe and Asia multiple times when she lived there. I was in a golf league and loved playing weekly. I worked out. I was active in my community with fundraising and part of several organizations. I had a very busy life which I loved.
How I felt after diagnosis: With my first diagnosis I was scared but hopeful, as it was caught early. The second time I was in shock that it came back. I never felt that it would. The third time I was a little less shocked because I had prepared myself with the idea it would come back again.
Telling my family and friends: One of the hardest things was letting my family especially my parents know all three times. But I couldn’t have asked for a better support system. After my third diagnosis my friend Kristin started Jenn’s Tribe. Her intent was to give people who wanted a bracelet to wear. It turned into a Facebook page that is still active today and a great way for me to keep people up to date.
Also, people donated money when getting a bracelet. Since I was fortunate with having insurance covering most of my out-of-pocket expenses, I was able to donate the money raised to our local hospital foundation that I serve on the board to help assist cancer patients that do not have the support system that I am so lucky to have.
My treatment: I finished my clinical trial in April 2022 and started a new FDA approved drug Tivdak. In September of that same year, I experienced grade 3 Peripheral Neuropathy which caused severe mobility issues. Discussing my situation with my oncologist at MD Anderson and my local oncologist we decided for me to move my treatments back closer to home. I am still taking Tivdak but at a reduced dose and seeing good results so far.
Because of the neuropathy they sent me for a brain MRI to make sure it wasn’t being caused by something else beside the drug. It was discovered I had a 1.6 cm tumor in my right frontal lobe. And although that would not be causing my mobility issues it is a blessing that they discovered it and were able to schedule a Gamma Knife Procedure to target the tumor. My latest MRI shows the procedure worked and the tumor is shrunk and stable with no spreading. The neuropathy ended up being a blessing since the MRI would never have been ordered and I had no symptoms. I believe everything happens for a reason and with PT and determination, I am able now to go from a wheelchair to just using a walker for balancing improving every day.
What was most difficult for me: I think the hardest part is not being as active as I used to be. I no longer play golf like I used to or walk my dogs in the neighborhood. Also, having to give up my career was extremely difficult for me being such a driven, goal-oriented person. I believe now it was the best thing I did so I now can concentrate 100% on my treatments. As someone said, “cancer is my new job”.
What I did to help myself: I joined an online support group during COVID since they went virtual and have formed incredible friends from that group. Through MD Anderson’s Cancer Connect program I met someone who led me to Cervivor. I spent the first year soaking it all in but now am active in the group and look forward to continuing to learn more.
I have been able to attend Cervivor school and become a graduate which was a goal of mine. I also am doing advocacy work outside of Cervivor. I was featured in AARC’s Annual Progress report to congress about my experience with clinical trials. I also was appointed in December of 2022 to NCI’s Cervical Cancer Task Force. In addition, I am a consultant with two medical organizations.
Where I am today: I am receiving treatment every three weeks and spending my time with my husband and fur babies (two chocolate labs Chase Nittany and Lloyd Bryce). I also love all my advocacy work, especially working with Cervivor.
What I want other women to know: One thing I tell so many other cancer patients is don’t let your diagnosed or prognosis define you. I was given 15 months in 2018 which was a very hard message to receive. But with the support of my husband, friends and family I did everything to beat those odds and continue today. A Stage 4 diagnosis is not a death sentence. Never give up and always fight for yourself. You know your body better than anyone.
How I will try to help others: I have found in my support groups that I am able to provide advice or just listen especially to those who are newly diagnosed or have metastatic cancer. I am also passionate about educating people about prevention and vaccine measures so they can make educated choices. I don’t want anyone to go through what I have. Last, I have a passion for fundraising and want to continue to find ways to continue to do that for cancer patients who may not have the resources I have been blessed with.
I love all my advocacy work especially working with Cervivor. It was absolute honor at Cervivor School to be awarded the Cervivor Champion Award and plan to make that a driving force to continue my work in the cervical cancer space inside and outside of Cervivor.