How a Teal Postcard Led Me Here

Up until my thirties, my only medical history consisted of having a history of ovarian cysts which even required surgery to remove them; but ovarian cancer was not in my vocabulary. When I started to spot (bleed) and have some abdominal pain, my first thought was “oh I probably have another cyst”. I guess technically, I was right. I made an appointment with my general practitioner, who referred me to my gynecologist, who then brought on a gynecological oncologist “just in case”. After ultrasounds, internal ultrasounds, and MRIs and discovering the cysts had basically spread everywhere, I was booked for surgery. Originally, my surgery was meant to be laparoscopic (small incisions with a 7-10 day recovery time), however, after my MRI it was advanced to full laparotomy, requiring a larger incision with 6 – 8-week recovery time. I was nervous.

After my surgery and a week in the hospital, my recovery was hard. Physically, emotionally, spiritually… hard. I ended up having a full hysterectomy that left my body pretty beat up. I was unable to care for myself and had to rely solely on family and my new girlfriend to help me. The smallest of actions digesting food, bathing, and walking were all painful. I won’t even tell you what going to the bathroom was like! I had always been an athlete and focused on fitness, but this wasn’t something I could just “walk off”. Understanding that I was not strong enough and had to ask for help was very difficult for me to accept, but I didn’t really have a choice.

My initial results of my tumor scan came back as “borderline”, meaning ‘not exactly’ cancer. My tumor samples were sent for further testing, so for the first few weeks of my recovery, I still didn’t know my full results. I finally got a call around week 3 or 4 that after further testing it was confirmed that I had Stage IIIC Low-Grade Serous Carcinoma. This was crushing, and even harder because I then had to call my parents and let them know. I had to say it out loud, “I had cancer”.

I soon met with my new oncology team and learned more about my diagnosis and what my choices were for treatment. Since I had low-grade cancer, my options were a little bit different in terms of care. I was told I could just wait and see if I had a recurrence or I could try chemotherapy. The current chemo treatments were not shown to be effective in treating low-grade cancer, however, was a requirement to have if I ever wanted to be considered for a potentially helpful clinical trial. Awesome, the ball was in my court for this decision. As I am not really a wait-and-see kind of person, I chose to move forward with the chemotherapy.

It was now April 2015 (just a few weeks past my 31st birthday) and I was patiently waiting for my 2nd or maybe 3rd infusion appointment when I noticed there was a postcard on the front desk that read “NOCC 5K Sept 2015”. Since my surgery, my body had gone through extreme unwanted weight loss and then followed by weight gain that I had intentionally gained so I would be strong enough for treatments. I was just starting to be able to feel strong again in my core, I could take longer walks, and even at times ride a bike. However, the chemo often reminded me that I was still in treatment. In my head, I could still move, but there were times when I would try to jog to catch a train and I would end up collapsing to the ground. After some deliberation, I decided that I was going to participate in the NOCC 5k run. Running was something I have done many times before for various fundraisers and foundations, but this one would be different. It would give me a reason to move, and reason to get stronger, and a reason to focus on something other than my cancer!

I finished my treatments in July and when September 2015 finally rolled around, I was ready. I was new to the NOCC event and was excited to see so many people wearing the teal and of course to get my t-shirt! You could feel the energy of the crowd as the race got off to a start, which gave me the boost I needed to run and cross the finish line. Being surrounded by so many people who were also affected by this disease was empowering. For this first time in a long time, I felt strong again and I have been running in that race ever since. I even managed to make it onto the top 3 survivor finishers list, which was rewarding in itself but also an amazing feeling to be able to stand next to other women who I know felt just as proud of themselves to be there.

My treatments might be over, but the medications, mental breakdowns, scans, and “new normal” adjusting continue. I started off with monthly appointments, which moved to quarterly and now every 6 months. I also get MRI scans twice a year or more if there is an issue I am concerned about. It took a little while to get used to getting in that MRI tube, but I have learned to relax (as long as I can choose the music). I take medication every day and am fully menopausal in my 30s. I have to remember that my bones are getting more brittle and to be wary of how much calcium is in my diet. It also took a few years for my hormones to settle, to get used to the hot flashes and the surprise crying, but I got there.

Since my first race, I have really become a part of the NOCC tribe to try and help spread the word about this silent disease that often gets detected too late because its symptoms are often disguised as PMS or just ignored. Over the last 5 years, I have found comfort in being part of something that is bigger than myself. Not only has it allowed me to help educate others but also to grow my own network of support. Through the NOCC I was able to participate in a lecture for medical students to understand the point of view of ovarian cancer patients, when I moved to another state, I had the NOCC Cancer Connect resource to help me feel confident in choosing a new care team, and during the pandemic joined the virtual Teal Hearts peer to peer support sessions where survivors had a place to know they were not alone.

I don’t like to say that I am in remission or that I beat cancer; to me, I was never in a fight, I was just in treatment. Even saying ‘survivor’ feels a little strange because to me it’s ongoing, I am living with this diagnosis. Each year, I make the drive back to Philly (well pre-covid times) to remind myself that I am not alone and to reconnect with the people that I ran alongside when I started this journey. With the help of that teal postcard, I can stay motivated, live with a larger purpose, and hopefully help other women that have been affected by ovarian cancer.