How my story begins: I got my referral to a new OB/GYN when I had moved across town to get my annual Pap smear. Getting that annual Pap test began my cancer journey. The cells came back ASC-H. Genetic counseling due to my ethnicity and stat gene testing revealed I had a cancer-causing genetic mutation on top of HPV. It went spiraling quickly
Life before my diagnosis: I was leading a very normal life for someone who is disabled with Ehlers-Danlos syndrome. I took care of my health. I ate healthy and appropriately for being a type one diabetic on an insulin pump. My quality of life was good, and I was confident and chill.
How I felt after diagnosis: I felt numb, contaminated, confused because it had been 22 years since my last abnormal Pap test and in the 1990s they didn’t test you for HPV. I felt terribly alone and afraid. I felt that my college education had been for nothing if I wound up getting cancer from an STI. I googled my brains out and luckily found Cervivor right away. I was shook to my core until I reached out!!
Telling my family and friends: I told my partner, my best friend, and my landlord who I "cat nanny" for right away. Because of the pandemic, I was able to keep things quiet as treatment was delayed. It’s a cancer you feel stigmatized for, even though you did nothing wrong and almost everyone has HPV at some point, you still feel ashamed and guilty. You shouldn’t, but I still did. I decided to tell all my friends on social media two weeks before my treatment. It scared the bleeping bleep out of me. I was surprised to find friends who have gone through cervical dysplasia or relatives who'd had cervical cancer. People were supportive overall. I found out who my friends really were and that I had more friends than I thought I did. Not being ashamed of my cancer has improved my quality of life during my cancer journey.
My treatment: I had a total hysterectomy with bilateral salpingo-oophrectomy. I literally had my hysterectomy just a week before I sat down to write this (Jan. 2021). I had my reproductive organs removed from my cervix up including both ovaries and Fallopian tubes. It was basically the “Everything must go! Going out of business sale" surgery so far. I will know in February if I need further treatment.
How I felt after treatment: I am only a week out right now. I am definitely feeling the effects of the surgery. I am experiencing surgical menopause. My body feels different and it will continue to feel different. I have moments I feel very confident and I have moments I feel very scared.
What was most difficult for me: Being chronically ill and disabled and having to go through a cancer diagnosis and treatment and whatever comes next has pushed me beyond my limits.
Currently, surgical menopause and feeling alone is definitely worsened by the pandemic this year and “I already have chronic illnesses! cancer now? really?!?!?”
It’s also hard to talk about cervical cancer. It’s not pink and cute. No one talks about cervixes even until there’s something wrong with them.
What I did to help myself: I joined the Cervivor community, educated myself, meditated, colored, read, and wrote bad poetry.
My life after cancer: It will be good! Different but good! I definitely will eat healthier, show myself more compassion, empathy and kindness. I am not afraid of setting healthy boundaries.
Where I am today: A week out from my surgery, I am at home resting on the couch, cuddling a cat, and coloring.
What I want other women to know: HPV and cervical cancer never discriminate. An annual Pap test can save your life and insist on an HPV + PAP co-test. An abnormal Pap test is not the end of the world. It may be the beginning of a different chapter of your life. You may find out just what kind of awesome you are made of and who your friends really are. You are not your cervix and no matter what they do to treat your cancer, you are still a phenomenal woman. You are still here even if your body changes in your cancer journey. You are never alone. Reach out!
How I will try to help others: I want to make sure people in the disabled community and those in the LGBTQA+ community know that they too, if they have a cervix, need to get a Pap test and HPV test. They need to be aware of the HPV vaccine. Vaccines save lives!