How my story begins: I had an unusual Pap test result the year before I was diagnosed and I tested positive for high-risk HPV. Type 18 specifically. I was extremely surprised - as I'd been with only one partner, my spouse, for 20 years and we were both completely faithful to each other. How was this even possible for the HPV to lay dormant for two full decades? I spoke to my doctor and she said it was not uncommon for the body to just get rid of an HPV infection on its own. It didn't mean I had cancer and we could just wait for one more year to see what my next Pap test results were. One year later, I was still testing positive for the high-risk HPV type 18, so she referred me to an experienced gynecologist surgeon. She did a colposcopy on me and, although she did not see any tumors immediately, she recommended that I have a hysterectomy because she saw that I had so many abnormal cells all over my cervix. It did not look "normal" at all. She scheduled me for a cone biopsy right away. My hubby went to the hospital with me for this surgery and my doctor took a huge cone sample from my cervix. We anxiously awaited my cone biopsy results.
Life before my diagnosis: I was working full-time and overtime (40 to 60 hour weeks!) for the Wisconsin Legislature. I was also a mother and wife, busy raising my youngest son, who was still in elementary school. I was always on the go. I exercised daily, taking long walks through the park, and my calendar was packed with my son's basketball games, birthday parties, school events, and visiting with family and friends when I wasn't working. I squeezed in my household chores and grocery shopping on the weekends and juggled it all seamlessly.
How I felt after diagnosis: I was at work in my office when my doctor called to say that the biopsy results were in. I had a malignant tumor and it was Stage 1A1 cervical cancer. It was caught early and my margins were clear. I was very lucky that it hadn't spread beyond the cervix yet, but since I had abnormal cells all over my cervix and uterus already, I should schedule a hysterectomy with her. I immediately told my boss I needed to go home for the day. I burst into tears in her office, and I told her I had CANCER! I was in disbelief; I really didn't have TIME to be sick, to have cancer! My son was only in 5th grade. I had to be around to raise him and watch him grow up! I was distraught, so sad and terrified of what his potential future would look like without his mother in it, if I didn't make it. I was scared I would die and leave him without a mom.
Telling my family and friends: I really dreaded telling my family that I was sick. In the recent years leading up to my cancer diagnosis, we had just lost multiple close family members due to cancer and I didn't want anyone to worry about me. There were lots of tears and I could barely get the words out when I told my husband and my parents. They were all wonderfully supportive and we discussed next steps. We decided not to tell my young son about my diagnosis, as his grandma, his aunt, and his cat had all just died of cancer within the last year and I didn't want to scare him that he was going to lose his mom too. I was going to beat this!
We went to get a second opinion with gynecologist oncologist at the UW Carbone Cancer Center. The oncologist was very thorough and he wasn't as sure that my margins were indeed clear. I might need another cone biopsy to be sure I was only at Stage 1A1. I started getting nervous that I would actually miss my son's 5th grade graduation due to the timing of multiple surgeries and the recovery time following each one.
Luckily, after consulting with several other experts, they determined that I could go ahead and get my hysterectomy right away, without waiting for another cone biopsy first. He agreed that a partial hysterectomy should take care of removing my cancerous tumor and that I shouldn't need any radiation or chemotherapy afterwards. Phew! I was going to be able to attend my son's graduation ceremony!
My treatment: For the first time in 20 years, I completely cleared my calendar and took off work for 8 weeks to have the partial hysterectomy and to recover from it. It was the full removal of my uterus, my cervix and both fallopian tubes. I gave my doctor permission to dissect my lymph nodes and remove my ovaries, if needed, if during the surgery she noticed something suspicious looking once she opened me up. At my young age, to do so could cause long-term heart problems, a shortened life span, and throw me into instant menopause, so she preferred not to unless absolutely necessary. I was cautiously optimistic. I was already done having kids and I was so thankful that I did not need to worry about my fertility staying intact.
How I felt after treatment: I had a horrible migraine for days after my surgery and I could barely move without pain. But I did not need a complete hysterectomy, just the partial hysterectomy. So all I had to do was recoup now. I would see my son graduate elementary school! Recovery from the surgery was hard. I couldn't even lift a gallon of milk or push a vacuum. I had gone from daily walking 2 hours per day to not even being able to walk around the block for weeks after my surgery. I quickly gained weight and felt terrible. And yet, I was so grateful. I was CANCER-FREE! I also had 12 other tumors removed from my uterus that all turned out to be benign. I was very relieved to hear that! PHEW! I let out a big sigh of relief. Maybe now I could breathe again. However, I was still always so scared the cancer would return. Honestly, even after five years, I still have that fear but it feels a little less overwhelming with every year in remission that passes.
What was most difficult for me: Slowing down and stopping my "normal" life (working, exercising, household duties, etc.) after my surgery was the biggest challenge for me, to just stay home and "do nothing" in order to recover. I was used to "going" all of the time. And now I couldn't. My life was put on hold for a while but I told myself it was only temporary and it gave me time to process everything I had just gone through. I was so aware how lucky I was that it was caught at such an early stage. I knew I was extremely blessed that I had survived. And I would come out on the other side of cancer as a Cervivor!
What I did to help myself: I built up my strength by slowly starting to go on my walks again. It was for my mental health as much as it was for physical exercise. I listened to music and gave myself permission to cry as needed. Life is so short and precious. I reflected on how much I wanted to live! There was so much I hadn't done yet. No one looks back at the end of their life and thinks "I wish I had worked more". For me, having cancer was life-changing because I realized I didn't want to spend all of my weeks working a million hours of overtime anymore. I decided that I definitely needed to make a career change, after working so hard for two decades for the Legislature, so that I would have more time to spend with my family and friends who I love so dearly. I also started practicing better self-care by taking a daily bubble bath before bed every night.
My life after cancer: I am almost five years in remission now. Yay, doing a dance of JOY! My son is in high school and is on his school's JV basketball team. We have been to many of his basketball games since my cancer diagnosis and treatment. And we survived the middle school years together! LOL! I am just SO thankful to still be here for him and my family! It feels like a second chance at life; what an absolute miracle! I also decided to get "healthy" so that I can lead a longer, healthier life. I cut out most sugar out of my diet, since cancer cells feed on sugar, and now I've lost 85 pounds too! I exercise daily again it feels amazing. I am strong and energetic again!
Where I am today: I am still working full-time for the State of Wisconsin, but now I work as a grant specialist for a small state agency that gives students financial aid to attend higher educational institutions. I find it challenging and rewarding. I have a flexible schedule that gives me every Friday afternoon off of work and allows me to spend more time with my loved ones than ever before. I don't worry as much about what other people think of me or my choices now as I did before I had cancer. After experiencing a life-threatening disease, I know first hand that you only get one life to live and I have to stay true to myself, even when it means setting tough boundaries by taking time for myself, which used to be my last priority.
What I want other women to know: PLEASE GET YOUR PAP TESTS ON A REGULAR BASIS! I went from having HPV with no visible abnormal cells to having full-blown malignant cancer cells in less than ONE year! It happened so fast and my outcome could have been catastrophic if I had waited another three years to have my next Pap after my first abnormal one.
And if you do get diagnosed with cancer, you got this, girl! You are going to discover you are stronger than you ever thought possible! It can be a very difficult diagnosis to cope with it. There seems to be a negative stigma surrounding cervical cancer since it is caused by HPV. It can feel isolating and it is hard, both emotionally and physically. But asking for, and accepting, help from those who offer it to you is priceless! You will need your strength to get through treatment, so please take advantage of any assistance you can get while you are going through it. Try to keep a positive mindset, and go easy on your expectations of yourself. Recovery takes a long time and in many ways, your life will never be quite the same again after having cancer. So just give yourself a break from your "usual" life and take good care of yourself first for a while.
How I will try to help others: About six months after my surgery, one of best friends got diagnosed with Stage 1B1 cervical cancer. We got together for coffee right away to talk about my cervical cancer experience and what she could possibly expect from treatment. Having the opportunity to use my cancer experience and "pay it forward" for a friend was healing for me and helpful to my bestie. I was able to be there for her in a way that many other people who haven't experienced cancer just couldn't. I was so happy I could provide her with both cervical cancer knowledge and also some emotional support. We are still very close and she is also in remission after her hysterectomy as well.
I adore this Cervivor community and everyone I have met on the Cervivor FaceBook page.
Any additional information you'd like to share: "And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure whether the storm is over. But one thing is certain. When you come out of the storm, you won't be the same person that walked in. That's what this storm is all about." --Haruki Murakami
Keep the faith and embrace each day to the fullest, in any way you are able. Sending you and yours hugs, love and joy.