How I felt when I was diagnosed: Anyone who has been diagnosed with cancer will understand the crazy, surreal circus feeling I experienced in those first days after hearing the “C” word: the feeling of being in a ring with spotlights shining on you – with medical professionals, family and friends paying inordinate attention to every movement you make and every word you say.
Then there is the emotional roller-coaster ride or more accurately, the feeling of being on a Tilt-a-Whirl that never seems to stop. Morning and night, all day long, you are up or down, swinging violently from mood to mood. I went from feeling like I had to live for the moment and had to create thousands of special moments to feeling that I needed to slow down and savor every second. My life was no longer an infinite string of days like I believed it would be; it was now finite and confined to the circus ring.
My husband and two college-aged boys, along with my dad, siblings, and friends, gathered around to support me. This crowd of supporters were the spectators watching in fear as terrifying feats were performed in the ring; they were the people gathered around the perimeter fence, feeling dizzy as they watched me being tossed around but helpless to shut the ride down or pull me off.
Why I was surprised: The first spin on the Tilt-a-Whirl was that I had tested HPV-positive. I also tested positive for HPV 18 – one of the top 2 high risk varieties (and the one considered the most insidious as it tends to hide deep in the tissue avoiding early detection).
My head started spinning with this news. HPV is an STD! As a woman nearing 50 who has been married for 25 years to the man I started dating in high school, I wrongly assumed that HPV was something I didn’t have to be concerned with. My husband and I had just celebrated our 25th wedding anniversary and we had been together over 30 years. I had only been in two intimate relationships in my life.
I considered myself a poster-child of low-risk living. I’m a high school teacher; I hold multiple master’s degrees; I go to the gym and maintain a healthy BMI; I volunteer for my church; I have never smoked and was only on birth control for a limited time. STD’s and cervical cancer, in my mind, happened to women with numerous partners; women who smoked and weren’t educated enough to take care of their health. Of course, I was very wrong.
Experiencing symptoms: Four years prior, when I was approximately 44, I started experiencing minor spotting after intercourse. There was no pain. No sense of bleeding out – just a little pink.
Of course I panicked when I ran a Google search and cervical cancer came up as a possibility. I scheduled an appointment with my gynecological nurse practitioner who assured me that all of my Pap tests, taken routinely according to the guidelines, were negative. However, to be safe, a uterine biopsy was performed. It was negative.
Over the next few years, I mentioned the continued post-intercourse spotting at each routine visit along with the profuse clear discharge that I had started experiencing. All my tests, however, showed no abnormalities. I had also started having the occasional hot flash. I was, it appeared, entering a normal peri-menopause.
As this peri-menopausal time progressed, I began having outrageously heavy periods. As a school teacher, this seriously impacted my work in the classroom. It was during a procedure called an ablation that my Gynecologist discovered the tumor high in my cervical canal – an area that is a less common location for cervical cancers and unfortunately for me, an area that Pap tests are notoriously ineffective in testing for cell abnormalities.
My treatment: Because the cancer had not yet metastasized, I was a candidate for surgical removal of the tumor. I underwent a robotically-assisted radical hysterectomy. The aggressive surgery was successful with the pathology report showing that the lymph nodes and the margins surrounding the tumor were clean and cancer-free.
Where I am today: The recovery is ongoing – too much activity too soon caused surgical complications. In addition to that, I will visit with my oncologist every three months watching for any signs of metastasis – cancer cells that might take up residence and grow in other areas of my body. This will continue for years. And I am truly one of the lucky ones – I needed no radiation or chemotherapy.
I have experienced significant post-surgical complications and sexual dysfunction. My husband, a patient and loving partner, often reminds me that he would gladly give up sex if it means I will stay healthy. Of course, there is no easy guarantee of that! He also deals with the guilt of assuming he gave me the infection that lead to the cancer. And I still have the occasional fit of anger that it may have been his lifestyle prior to our meeting that caused me to get cancer decades after our marriage. Counseling has helped me deal with the anger and the fear of recurrence that I harbor. I wonder what my future and that of my family will be if the cancer reappears.
Yet, the future is promising for women younger than me: it promises that fewer women will unwittingly join the circus that I experienced. In the future, the only thing standing in the way of virtually closing down the cervical cancer circus in the US will be a woman’s disregard of her body’s subtle changes and a refusal to get routine, annual exams and testing according to updated guidelines. Trust me, this is not a circus you want to join or even one you want to visit with a mom, sister, or female friend!