Michelle

I never thought I’d be ‘That Girl’—the one with an STD or worse—cancer…little did I know.

My true nightmare as I knew it began in late 2001. I was twenty-six eagerly climbing the corporate ladder, giving no thought to motherhood. Like most women I hated the annual visit to the GYN for my yearly Pap smear but I never missed one.

I knew the Pap smear was a screening tool for cervical cancer, but like most women I believed a normal Pap smear meant everything was fine. My GYN informed me my Pap smear was normal but he needed me to come in for more tests. I was puzzled but I complied with his request. Apparently, unbeknownst to me he had run an additional test, the relatively new Digene HPV test, along with my annual Pap. The results indicated I had several high risk strains of HPV. When the doctor gave me the HPV results, I didn’t think much of it. I wasn’t very educated on the virus and overall I felt fine. I thought HPV was genital warts and I didn’t have warts.

My GYN did not tell me he was concerned about cervical cancer. He just told me he needed to take a closer look at my cervix with a colposcope, magnifying glass/scope. I was told the outside of the cervix looked great! He then preformed an ECC, endocervical curettage to scoop out a sample of tissue from inside the cervical canal. Two weeks later my GYN called, “We need a larger sample. Can you come in for out-patient surgery?” he asked. I knew something was wrong but I wasn’t quite sure what it was.

I arrived two days later at the hospital early in the morning. I was taken back to the pre-op staging area where I was given a gown, placed on a bed and prepped for surgery. The nurse placed my chart just outside the curtain and left to check on another patient; I grabbed it. I flipped through the pages. There it was in writing, suspicious for low endometrial or high endocervical malignancy. Fear raced through my veins. I kept repeating those words to myself...malignant, begnin, malignant. I could not recall the exact meaning but knew it was bad. Lori, my younger sister entered a moment later. I told her what I read. The blood drained from her face as I said the words.

My doctor had an oncologist with him. I immediately asked about the chart. They told me not to worry; the average age of cervical cancer is fifty. The procedure was just a precaution. I went into surgery believing the doctor would perform a cone biopsy, to remove a cone shaped portion of the cervix for closer examination. I woke to find out the doctors had not preformed the cone biopsy. A tumor could be seen inside the cervical canal once dilated. A one inch biopsy was removed using a LEEP, Loop Electrosurgical Excision Procedure, to avoid cutting into the tumor and removing only part of it before the pathology was confirmed. Later in the day I was released and sent home to recoup. I felt weird on the ride home; instinctively I knew what the pathology would reveal although I resisted acknowledging it.

The anticipation made me crazy. I wanted to run and hide but I couldn’t escape myself. Shopping was one of my favorite past times so it seemed like the perfect distraction. I was in Guess when my cell phone rang. It was the oncologist. I sat down in the middle of the mall. People rushed by me with their bags full of Christmas gifts. In that moment my world stopped. “Michelle, you have villoglandular adenocarcinoma of the cervix. We’ll need to perform more tests to determine the extent of your cancer,” the oncologist told me. After a brief silence, I blurted, “What—adeno…?”

“It’s cancer of the glands inside the cervical canal,” he responded.
“How could this be I had a normal Pap smear,” I questioned.

He explained the Pap smear was not 100%. In fact it is only a screening tool to help identify cervical abnormalities. During the Pap smear cells are scraped from the surface end of the cervix. My cancer was up inside the canal and therefore easily missed by the Pap. I hung up the phone and sat in silence trying to take in what I heard him say. I didn’t want to accept it.

A radical hysterectomy, included removal of several inches of the upper vaginal canal, which would leave me infertile, was recommended. I was not willing to surrender my fertility; I wasn’t married and had NO children. I refused the doctors recommendation and set out to find other options. With the help of my sister I learned of a procedure called a radical trachelectomy, designed to treat early stages of invasive cervical cancer while preserving fertility. After the procedure, a woman’s fertility is altered from approximately 80% to 50%. However, the success rates are comparable stage for stage to those of a radical hysterectomy. In Feb 2002 I underwent the radical trachelectomy. The physical and emotional pain was tremendous.

As time past I tried to put the experience behind me and move forward with my life. I still suffered from some physical pain especially during intercourse. I slowly overcame my emotional insecurities and found hope in my preserved fertility. I followed-up with my oncologist quarterly which included a Pap smear and annually an ECC. My relationship with Mark started only six short months before my initial diagnosis in 2001. Our relationship flourished during the next few years. We moved to a new city, bought a house and two dogs and in spring 2004 he proposed on the evening of my two year remission check-up. Life was good!

Five days later the tragic phone call came. My cancer was back. Again, my Pap was normal; it infuriated me. The ECC showed fragments of cervical cancer. The doctor recommended a radical hysterectomy but I could not listen to her. I was devastated. My fairy tale was just beginning…this couldn’t be happening. Initially, I resisted the doctor’s recommendation again. A second opinion, only confirmed exactly the same diagnosis and treatment. I could not run from my cancer or I would die. The doctors told me I had no choices left.

I reluctantly agreed, to the surgery. Feeling the need to have some control I insisted the surgery be on my terms—after the wedding. The wedding was in eight weeks in Jamaica and I wanted to experience it feeling healthy and happy, not sick. In the meantime, I scheduled an appointment with a fertility specialist to find out what options I might have if any to preserve my fertility. I wasn’t going out without a fight. The doctor educated me on harvesting eggs and creating embryos which could be frozen and later implanted in a gestational host. Both my oncologist and the fertility specialist discussed in great length with me the risk. I was warned the hormones used to stimulate the ovaries for the harvest could cause my cancer to spread. I didn’t care. I wanted a chance to someday have my own biological kids. There was a strong chance I would lose both ovaries during surgery so there was no time to waste. The procedure needed to be done before the wedding. Within a few weeks we had seven embryos frozen and departed for our wedding. It all seemed so surreal!

I checked into the hospital for the radical hysterectomy and partial vaginalectomy just days after I returned from my wedding and honeymoon. The pathology showed the cancer was more progressed than originally thought. It invaded through 50% of the uterine wall requiring additional treatment—chemotherapy and radiation.

I spent the first year of my marriage fighting for my life. Mark was a trooper and fought right along side me. Surgery removed all but two inches my vagina and the radiation caused the remaining vaginal muscles to atrophy. I had to do physical therapy which included using various size dilators to stretch my vaginal canal. It took another year to relearn my body and eventually enjoy sex again. The battle was difficult, painful and permanently left its mark on my life—emotionally and physically.

I have an eight inch scar across my abdomen to remind me everyday of where I’ve been. Today I am four years back in remission and grateful for every breath I take. So many women don’t survive this disease. I have, not once but twice! I count my blessings daily. Mark and I are happily married and have a baby girl born via a gestational carrier.

Eventually, I grabbed a pen and started writing. I knew it was time to tell my story so another woman would not have to suffer, like I did. Visit me at www.michelleleewhitlock.com.