How my story starts: My story starts about two months before I found out I was pregnant. I had an IUD removed so my husband and I could start a family. I started to spot between periods, so I called my OBGYN right away. My regular doctor was out, so I saw another in her practice. She took a quick look, thought all was fine and it was hormones acting funny post-IUD removal. Sounds good to me. No need for a pap, no big deal.
Two months later, I found out I was pregnant. My husband and I were elated – a baby due April 1st. Everything was going smoothly, until about 14 weeks into the pregnancy. I started having episodes of bleeding. Each time I went in, they could tell it was coming from my cervix, but weren’t sure why. Initially, the explanation was pregnancy hormones, friable cervix, None of that sat well with my primary OBGYN so, about a month prior to my due date, she repeated my pap. Three and a half weeks early, I went into labor.
My little guy was sunny side up which not only meant back labor, but a nice long drawn out one. I progressed slowly which meant lots of cervix checks. Those checks turned into “have you ever had a LEEP, your cervix feels like it has scar tissue?” Nope, nope, nope. I had a colposcopy 10 years prior, that came back low grade, and cleared. I remember saying “Are you telling me I have cancer?” I should have kept my mouth shut. I was an anomaly in the L&D unit. But all was forgotten when Wayne finally came perfectly, Friday March 13, at 10:47pm after 27 hours of labor.
My OB paid me a visit in the hospital 24 hours after delivery and let me know my Pap was abnormal. The cancer word entered the equation May 29, when my little Wayne wasn’t even 3 months old.
My treatment: Bilateral ovarian transposition and salpingectomy, followed by chemo and radiation
How my story changed: Based on my age and the pathology, I was an ideal candidate for a radical trachelectomy. My cervix and cancer would be removed, but my uterus could stay so I could bear more children. I then wrote the story I wanted – “I was diagnosed with cervical cancer when I was 31 years old. Pregnancy helped ‘em catch it. I had this amazing oncologist who robotically removed my cervix, but I kept my uterus. No chemo, no radiation. I’ve had (insert any #) more children since cancer. Cancer took nothing from me, screw you cancer!!!” I could be an advocate, keep my fertility, and be a positive light for others faced with cervical cancer. I put the cart before the horse, or so I realized on surgery day.
I woke up in the recovery room a few hours later, and something didn’t feel right. I remember my oncologist telling me I’d have a catheter for at least a week. The first thing I asked the nurse in the recovery room was if I had one; he said no. So I knew the story had changed, but I wasn’t sure how.
It turned out that both of my sentinel lymph nodes tested positive for tiny amounts of cancer. My surgery was a bilateral ovarian transposition and salpingectomy, which is just a fancy word for removing my fallopian tubes. I also had additional pelvic and para-aortic lymph nodes removed. My cervix stayed, my uterus stayed, my cancer stayed. Get the ovaries out of the way, so there was some hope they’d be spared from radiation. My body was just prepared for chemoradiation. I was devastated. I knew my fertility was out the window. But why did the cancer get to stay?
When my oncologist finally came back to talk to me, he said the only thing those tiny cells in my lymph nodes did was take my fertility. My prognosis hasn’t changed, stage still the same, outcome remained excellent, full cure anticipated. He said it was best to leave my uterus and cervix to give the radiation a focus and protect my other organs.
Today: So here I sit, almost halfway through my treatment. Six rounds of chemotherapy sandwiched between 25 external radiation and 5 brachytherapy treatments. I anguish a lot over why my cervix gets to stay. It tried to kill me. Why did my uterus stay? It’s being rendered useless as it gets pummeled with radiation. I wish I had a hysterectomy – piece of mind maybe? Relying on radiation to kill my tumor is inherently very scary to me. I want it out. It’s no use to me anymore. I’m working on the trust side of cancer, trust in a technology that works, trust in all my doctors, and trust in the process.
My future: I know, on the far side of this, I will be OK. I’ve come to terms with the physical aspects of my treatment, the fatigue, the nausea, and all the other oh so fun side effects that come with pelvic radiation. I’m working on how to not be afraid when treatment is over. How to trust that chemoradiation will be enough – it will kill all the cancer cells. I know I have yet to grieve my loss of fertility, but that seems bearable when I see my little Wayne smile and laugh. Ultimately, he saved my life. So here I am, fighting like all my Cervivor sisters before me. I’m realizing that when this is over, my final story will not be what I had originally constructed. It’s still in the making. But whatever shape it takes, it will be mine, and someday I hope it will help another Cervivor sister as she traverses these rocky waters, and see the horizon that lies beyond cancer.
“You’ve got to swim, swim in the dark. There’s no shame in drifting, feel the tide shifting and wait for the spark. You’ve got to swim, don’t let yourself sink. Just find the horizon, I promise you it’s not as far as you think” – Jacks Mannequin, one of my all-time favorite bands. The lead singer Andrew McMahon is a young adult cancer survivor who just celebrated his 10-year cancer free anniversary from acute lymphoblastic leukemia.
Check out Cervivor blog posts by Lizzi: