How my story begins: After several years of avoiding those unpleasant female check ups, I decided I should be seen because of severe changes in my menstrual cycle. In the spring of 2016 my GYN told me I had cervial dysplasia accompanied by an HPV infection which included both the 16 and 18 strains of the virus.
Knowing I was done with childbearing and dealing with severe menstrual issues, I requested a hysterectomy. She laughed and said that would be "too invasive" and not necessary. So a leep procedure was done and I was sent on my way to be checked again in 6 months. This went on for 3 years: Pap tests, biopsy after biopsy, removing cancer cells, asking for a hysterectomy and my request being completely disregarded.
On October 3, I went for my next check and the very first thing I asked for was a hysterectomy. I was adamant this time because I felt that I had the right to decide how to treat my body. Again she made me feel inept to even be making the request and went on to insert the speculum. After a minute or so the look on her face changed. Even her color changed. She tried to be nonchalant about it but she immediately asked her nurse to get everything needed to do an immediate biopsy. She could see a tumor but tried to convince me that she couldn't be sure of what she saw. She sent me on my way and said she would call with the biopsy report. After reporting to me that I indeed had a cancerous tumor on my cervix, I asked again for a hysterectomy. She told me that I should take that up with the GYN oncologist that she would be sending me to. I was so enraged at this point, dealing with the hormonal roller coaster of peri-menopause and my husband out of the country during all of this. I was a hot mess.
Life before my diagnosis: I've always dealt with abnormal hormone issues. But over the past few years before my diagnosis I'd had increased pain, irregular bleeding and hemorrhaging. At that point, it became "sketchy" going out in public during my menstrual cycle.
How I felt after diagnosis: The emotions were high. I was scared. I was sad. I was angry. I wondered if this could have been avoided if my doctor had only listened to me. I researched everything I could find on cervical cancer and HPV. I started blaming myself for having too many sexual encounters in my younger years. Shame, fear and disgust weighed heavy on me. At least now, I would get that hysterectomy! Just please NO chemotherapy! Just two years before all this, I had seen my mother go through chemo and it nearly killed her. Why was this happening to me?
Telling my family and friends: I felt defeated and scared to even share my diagnosis.How do I tell people I have this "filthy" disease? What will my children think? My parents? My church friends? At first I told people I had uterine cancer because that seemed more acceptable. After more tests and scans they found the cancer had spread and then I felt better about saying I had "Squamous Cell Carcinoma in the pelvis." I was trying to avoid the stigma of cervical cancer. Now, with each passing day, I am getting braver talking about it. I realized how important it is to be an advocate of awareness so other people do not have to go through this too.
My treatment: After the PET scan I found out that the cancer had spread to my lymph nodes and surgery was out of the question. That meant radiation was a must and chemotherapy was likely. I had a port placed the next week. By the end of the month I started a 28 day regimen of external radiation that would take me through Christmas. I also had 6 weeks of Cisplatin to boost the effects of the radiation. After just one week into treatment, I found out I would also have to have 5 internal radiation treatments (brachytherapy). These were very taxing on me.
After 3 chemo treatments with the Cisplatin, I was experiencing ototoxicity which included ringing in the ears, hearing loss and sound vibrations inside my head. I was then switched to carboplatin for the remaining 3 chemo treatments. During the brachytherapy, reports were coming in that the tumor was shrinking and my body was responding well to this cervical cancer treatment protocol. I felt extreme exhaustion during my treatment. I had mild nausea that I was able to manage with the meds, and I had significant hair loss. I started off with a very thick head of hair but each time I showered, gobs and gobs of hair came out. The fear of being bald made me cry every time I washed my hair. I didn't lose it all and most people would not even notice the loss but I felt it. My first follow-up after the new year included a CT scan. The doctor said there could still be cancer in my lymph nodes as they were still appearing to be slightly enlarged, so another round of chemo it was, this time with a higher dose of Carboplatin along with Taxol which is extremely likely to take the rest of my hair. I started my second round of chemo this week.
How I felt after treatment: I am still undergoing treatment.
What was most difficult for me: The initial fear of death and the stigma surrounding HPV and cervical cancer.
What I did to help myself: I tried to research and educate myself. I started to reach out and found Cervivor!
I also have devoted myself to a healthier lifestyle and lots of prayer to the Great Physician!
Where I am today: I am still undergoing treatment.
What I want other women to know: They are not alone in the battle or the stigma surrounding HPV and cervical cancer.
We can empower one another with courage, strength and dignity while trying to make a change in the acceptance of this cancer and in the medical advances to eliminate it.
How I will try to help others: Reaching out. Being a voice. Helping to support others with compassion and education.