How my story begins: In 2017, my husband was offered a job as a Department Head at a land grant university in Illinois. Our youngest child was in college in California and it seemed the perfect opportunity for us to move to a new place. Just weeks after moving to a new city and a new state where I knew no one, I discovered my husband's infidelities. I was emotionally traumatized--so much so, that I did not get my annual physical. I DID go to the local public health department to be tested for STDs, as did he, and those came back negative for the other STDs. I did not think to have a Pap and one was not offered to me. A little over a year later, as we were still embroiled in revelations and recovery, I felt an itching in my vulva that would not abate.
I finally saw a gynecologist and she saw a lesion which she removed and sent for a biopsy. She also gave me a Pap test. My lesion came back as vulvar cancer, stage 1 and my Pap revealed I had HPV16. I then decided to go to Dana Farber in Boston (my hometown and where I still have family) and a cold knife cone biopsy showed I had cervical cancer, stage 1B. I had a radical hysterectomy in May, 2019 and I returned to Boston every 90 days for the removal of suspicious areas. In the four years since my initial diagnoses, I have had just one time that I have not had VINIII in multiple areas.
Life before my diagnosis: I'm going to describe my life before my diagnosis in a bit of an unusual way. When I got my diagnosis (of both cervical and vulvar cancers), I was in the midst of the greatest turmoil I had ever known.
Eighteen months prior to my diagnoses, I had discovered that my husband of 33 years had been living a secret life of sex with men and with prostitutes. This is a very important part of my story and one I do not want to ignore or gloss over because it DOES have an impact on educating women. So, let me describe my life before I was aware of my husband's activities.
He was a professor at a land grant university in Kansas, we had four very active young adult children who were entering into their independence very well, and we had what I thought was a good and completely faithful marriage. I had a Master's in Marriage and Family Therapy (oh, the irony!) and worked in the local school system. We had lived in this community for twenty-two years and were extremely active in sports, our church, socially, and with work. I had been faithful for 35 years and thoughts of sexually transmitted diseases were not even on my radar. I had gotten my Pap tests regularly and nothing was ever amiss.
How I felt after diagnosis: As I describe, my diagnoses came amidst great emotional upheaval. I felt continued anger toward my husband, continued shock that this was happening to me, and truly frightened about what the future held for me. I did feel and continue to feel that I was in extremely capable hands with my medical team. I am now alternating treatment between Moffitt Cancer Center in Tampa and Dana Farber in Boston.
Telling my family and friends: I have a large family of siblings and a very tight-knit group of friends. I told everyone right away what was going on. I knew I would need the support and, indeed, I have been surrounded by love and care and concern throughout my journey.
I am adamant about telling my whole story and how I came to be infected with HPV16 not to place blame (although, of course, I do in my case), but because in no part of my brain or my heart did I think I was vulnerable to a sexually-transmitted disease. I was too old when the HPV vaccine became available and, truthfully, would have ignored it even if I were young enough. What need did I have as a woman in a faithful marriage?? As it tuns out, I did need it.
My treatment: My treatment has included a radical hysterectomy, removal of some of my labia, and countless numbers of wide local excisions to remove VIN III. In April 2023, I had an Anoscopy and anal dysplasia was discovered. I am examined every 90 days for vulvar cancer and will now add anal surgery every 6 months to monitor developments of anal dysplasia.
How I felt after treatment: I feel fortunate that my cancers were caught early and I have not had to have radiation or chemotherapy. I did use Aldara, a topical chemo, twice for a few months, but it did not seem to work. It is not easy to go and have your genitals cut up and sewn up on a regular basis. But it is a worthwhile price to pay to avoid harsher treatments. I'm grateful for my medical team.
What was most difficult for me: Again, what was most difficult for me was realising that the life I was living was based on a false premise and that I was the one paying the price for someone else's behaviors. HPV should not carry any stigma for people. It really shouldn't. But it would also be disingenuous not to recognise that sexual activity carries risks.
What I did to help myself: I relied heavily on my friends, I did a ton of research on gynaecological cancers related to HPV, and I decided to be very vocal about my own experience in order to help others. And I continued to eat healthily and exercise regularly. If I am going to be dealing with a chronic condition, I want to be in the best emotional and physical state.
My life after cancer: Well, no surprise here: I am in the midst of divorcing my husband of now 37 years. I moved to Florida because the sun makes me happy, and I am telling my story and encouraging HPV vaccinations to a wider audience.
Where I am today: I am still getting treatment and cannot wait until the time between appointments lengthens beyond 90 days. I am confident that my voice can help in the fight against HPV and in support of the vaccine.
What I want other women to know: I want other women and girls to know that HPV is a fact of being a sexual being and that we are all sexual beings. It is vital to protect yourself from this virus EVEN IF YOU DON"T THINK YOU ARE VULNERABLE. It only makes sense to protect ourselves from a very preventable virus.
How I will try to help others: On a personal level, I post informative videos about the value of the HPV vaccine and urge my younger friends and all of their children to get vaccinated. I attended the SGO conference in Tampa and look forward to attending more. It really invigorated my efforts.
Any additional information you'd like to share: My circumstances are an important piece of my story. I could have just kept to a script of detailing the medical issues I have encountered as an HPV16 patient who has developed two cancers from it, but I think the entirety of my story is a vital piece in educating others.