How my story begins: My daughter was graduating high school. I was teaching 4th grade and I was busy running the parent board at her school and dealing with college decisions, planning a party, prom and so much more. I started feeling like I had frequent urination. I kept trying to get an appointment with my PCP and couldn’t get in. I would go to urgent care and kept getting told I had a UTI.
Finally I advocated for myself. I said enough is enough and demanded a new primary care doctor. I saw her and asked for more tests. She sent me for an ultrasound to check for kidney stones. They found a harmless urinoma on my kidney and sent me for a CT scan. They saw an 8 cm mass instead. I’m probably the only person upset I didn’t have kidney stones.
I was then referred to Dana Farber. There they diagnosed me with cervical cancer. They knew before they even saw the biopsy results.
I had HPV and CIN3 in 2018. I had a LEEP and was “told” I had clear margins. I had a follow up pap that was fine. Then COVID hit and couldn’t get in to anyone in person.
Life before my diagnosis: I was a mom, wife, teacher, president of the parent board, and pretty healthy. My daughter was graduating high school and I was ready to start life as an empty nester.
How I felt after diagnosis: I remember feeling numb in the office of the oncologist. I didn’t do anything. He said it was at least stage 3 and too big for a hysterectomy and I would need to be sent to see a medical oncologist for chemo and a radiation oncologist for radiation. He said I needed a Petscan and bloodwork.
I walked out of the office and that’s when the tears started flowing. I had cancer and it hit me like a ton of bricks. Two nurses grabbed me and brought me in a private room and did my blood draw there so I didn’t have to go to the lab. They were so loving and kind and I will never forget that.
Telling my family and friends: I told my immediate family first. It was so hard to tell my daughter who was about to go 400 miles away for college. I decided to make it public on my Facebook to bring awareness to all the women in my life. I now push them to advocate for themselves.
My treatment: I had 27 external radiations, 4 cisplatin chemo infusions, 5 inpatient brachytherapy. Then my oncologist and the tumor board asked me if I would do extra outback therapy even if NED since I was stage 4a to try and prevent recurrence. I said yes. I was declared NED in January and had 4 chemo cocktails of carbo, taxol and immunotherapy (Keytruda). I finished that the end of March and now I am on just Keytruda and will be on that for at least a year.
How I felt after treatment: I’m still in treatment. I am on immunotherapy. I am now 6 months NED and I am so grateful to be alive but also so scared it will come back. I am determined to love hard and live life to the fullest! I am also determined to try and get back to as normal as I can. Since November I have done physical therapy with time-off only when chemo brought my platelets down. I just started back to work part time while I get stronger.
What was most difficult for me: I lost 60 pounds during radiation and so much muscle and strength. I was so weak. I also had a pulmonary embolism. Many don’t know we are prone to them when we have cancer due to sticky blood. My doctors are so aggressive and vigilant that they found mine before I had any symptoms. I was so scared I wouldn’t live to see my daughter graduate college, get married and I would never become a grandmother. I’m only 42 and I want to live!
What I did to help myself: I joined cervical cancer groups on Facebook including I'm A Cervivor! and I met my Teal Sisters! I love them all. I signed up for PT. I started advocating for myself and I got myself two amazing oncologists at one of the top cancer centers in the country. I trust them 100%! I looked up survival stories for stage 3 and 4 cervical cancer in my groups and read them all the time to keep myself positive and hopeful. I prayed and got stronger in my faith. I went to healing services and lit candles. I found joy where I could and I started writing down my worries and putting them in my prayer/worry box.
My life after cancer: I am 6 months NED. I go to PT and pelvic floor therapy 3 times a week. I’m going to Scotland this July. I am spending my time with loved ones. I started back to work. I now tell my story to others to give them hope and make them speak up for themselves!
Where I am today: I am doing pretty good. I am still always worried it will come back. I still get scanxiety. I still am on immunotherapy and blood thinners. I get a scan every three months and a pelvic exam. I had a LEEP in 2018. I was told I had clear margins but never did. I am working through that anger of being ignored, misdiagnosed and placated. I have gone through menopause because of radiation. I’m eating again but still 5’9” and only 120 lbs so I’m working on gaining some weight.
What I want other women to know: I want other women to know that they can advocate for themselves and their health! Don’t let the doctors ignore them! Follow your gut and keep fighting if you feel something is wrong. Get your pap tests and fight for them if you feel you need them. I couldn’t get one during COVID and I feel like things would have been different and I would have been diagnosed sooner if I had. If you have cervical cancer, your Teal Sisters are here with love, support and hugs! We have you back!
How I will try to help others: I share my story! I offer love and support to my Teal Sisters! I try and stay positive! I want to start writing more about my journey. I want to go to Cervivor School.
Any additional information you'd like to share: I lost my hair but only when I was on the chemo cocktail! Not all cancer patient lose their hair. This is a misconception. My hair is growing back now! I’m stage 4a and I’m determined to beat this cancer! 6 months NED and I’m striving each day to stay NED! I love all my Teal Sisters and will always have your backs!