Cindy

I received the first of far too many phone calls that started with “are you someplace you can talk?” when I was 28. And, to be perfectly honest, I have grown to hate phone calls that start out like that. The nurse practitioner who had done my Pap a couple of weeks earlier was calling with my results. Abnormal. At first I was thinking – Okay, this isn’t so bad. All of my friends have abnormal Paps all the time and it’s no big deal, right? Well, as the conversation continued my heart sunk as I was told that I had HPV. I’m not one of those girls. I’m not one of the promiscuous ones who should have an STD! The nurse practitioner assured me that it wasn’t a big deal, that everyone gets HPV at some point or another, and that it would just go away. In hindsight, I’m very thankful that my doctors broke the no HPV testing before 30 rule because finding the infection early not only saved my fertility, it saved my life.

So, I just went on with my life and didn’t think much of that diagnosis after a while. A year later I went in for my next Pap (and, just to be clear, I started getting Paps at 21 and have never missed a year) and my doctor added another piece to the annual visit. During that visit I had my first Colposcopy (it’s the biopsy where they rub vinegar on your cervix and look at it though a microscope. If there is a reaction to the solution the doctor takes a sample and sends it in for review). For four years, my visits with the OB Gyn were the same. No mention of HPV recurrence, a Pap plus Colposcopy, and a very strict reminder from my doctor to make sure that I would come back next year. On the fifth year, when I was 32, things got interesting. I went in for my annual and got abnormal results from the Colposcopy. To follow up on them my doctor asked me to come in for a LEEP procedure, which is a more invasive biopsy where they use an electrically charged wire to cut off the tip of the cervix. Three weeks later, on March 2nd, I got another of those phone calls. You know, the ones that start out with “Are you someplace you can talk?”. Only this time, there was a true sense of urgency, maybe even fear, in my doctor’s voice. I was at work and found an empty conference room so that I could talk since my doctor sounded so concerned. She asked if I had something to write on because I’d probably want to take notes. Take notes?? What!? Why do I need to take notes?? She informed me that I had adenocarcinoma insitu of the cervix. To non-medical folks like me, this means that I had noninvasive glandular cervical cancer which, at the time was more rare than other forms, and is more aggressive. I was floored! During our conversation my doctor was saying things like hysterectomy and adoption. I was 32, never married, and hadn’t had any children (but have always wanted to). This had to be someone else’s test result! This can’t be mine! Luckily, the phone call was near the end of my workday so I stopped crying long enough to pack up my things and get out of the office before anyone tried to talk to me. That night I made a few phone calls to my parents, my brother, my two closest girlfriends, and a family friend who is an OB Gyn. I didn’t want to tell anyone else what was going on. Partly because I was embarrassed that I had a cancer that’s caused by an STD but mostly because I didn’t have any answers yet and didn’t want to worry anyone. In fact, most of my extended family members still don’t know. The next day started my research process. I spent hours in bookstores, online, and in libraries trying to find more information on my diagnosis. There was almost nothing published about this in 2005 and I started losing hope that I’d ever be able to have a child. And, on top of not finding the answers that I so desperately needed, I felt completely alone. I only knew one other woman who’d been through something similar and she didn’t like to talk about it. There were no support groups for cervical cancer and I didn’t want to burden my family and friends since I knew that they were already upset about the diagnosis. After about a month of not being able to see a baby or talk to a friend about her pregnancy without crying I decided to see a therapist. On my second visit with her I realized that I was going through mourning, feeling the same emotions that I felt when a loved one passed away. So she and I met a few more times to develop a game plan for me to work through the fear and anger associated with the possibility of losing my fertility and having to deal with a cancer that has such a stigma associated with it. Once I could focus on the future again I started calling fertility clinics about freezing my eggs in case I needed to have a hysterectomy. Even Stanford told me not to waste my money because my eggs probably wouldn’t be viable after they were frozen (remember, this is back in 2005. They’ve come a long way since then). In June of that year I went in for another biopsy. This one is called an ECC and the results came back abnormal. This created a LOT of concern and my doctor had me come in for a cervical conization procedure. This is the most invasive procedure I’d had to date and it removes a significant section of the cervix. This procedure weakens the cervix and often makes it difficult for a woman to carry a child to term. Thankfully, the results came back clear.

In 2008 I found the National Cervical Cancer Coalition online and decided to go to their second annual conference. I didn’t know anyone who would be there and honestly had no idea what to expect but I knew that I had to go. One of the first people I met there was Tamika and I instantly knew that I wasn’t alone anymore. I now have a long list of amazing women, some I’ve met through the NCCC and others through Tamika & Friends, that I can turn to when I’m scared or sad, and with whom I can share the happy times. From 2005 to 2009 everything was as I’d hoped – Pap tests annually and regularly scheduled biopsies every three to four months with clear results. No abnormalities. And then, in December of 2009 I had another abnormal biopsy. The pathology report read “cannot definitively provide a benign diagnosis”. Oh boy did the red flags go up! My doctor started talking about hysterectomies, how she wanted me to be as aggressive as I was willing to be at that point, having another conization procedure (with a D&C), and adoption. I started feeling those same emotions from almost five years ago and knew that I needed to take control of my situation. I needed to know if I could have a child so that I could decide if this fight was worth fighting anymore. I made an appointment with the fertility clinic and went through fertility testing, answered about a million questions about cervical cancer in the process, and had to reassure the doctor who was afraid of my cervix while performing a dye Xray that it would all be okay. The results that I got didn’t make my decision any easier. In a way I’d hoped that the doctor would tell me that I couldn’t have children so that I could just have a hysterectomy, remove most of the risk for a cervical cancer recurrence, and know that I was okay with it. But, the doctor told me that I can have children but that I need to do it right away. I know that all of my doctors want me to live a long, healthy life but they don’t seem to understand that keeping my fertility isn’t about having a baby to check something off of my to-do list. It’s about the possibility of someday having a family of my own. And, having a hysterectomy now would mean giving up the hope of having that family. Yes, I know that adoption is an option and I know that I can freeze my eggs. But I know that giving up now would not be a good thing for me.

I had my five-year cancerversary on March 2, 2010. During the five years since my diagnosis I’ve learned a lot about myself. I know that I hate the look of pity that people give you when they know you have cancer, that it makes me sad for people not to know what to say to me because they don’t want to ask how I’m doing in case the answer is something they don’t want to hear, and I know that it’s more important to me than ever to tell family and friends that I love them. I’ve also met some amazing people, I’ve learned to appreciate the beauty all around me, and I’ve learned to be truly grateful for every morning that I wake up. I was lucky that my doctors found the disease before it became invasive. I’m thankful that I have doctors I can talk to, family and friends who love and support me, and a very understanding boss who never questions why I go to the doctor so often. Even though I’m one of the lucky ones, I hope and pray that no more women have to go through what I’ve been through.