How my story begins: My story really begins back in 2006/2007 when I was 28 years old. While going through a divorce I went to my doctor for STI testing and for the Gardasil vaccine. At the time Gardasil was only approved for women up to age 26 so I was too old! In addition, since the vaccine was brand new, not all doctors offices had the vaccine and most insurances were not covering it yet! Fast forward another year and I had my first abnormal pap. After a LEEP procedure I was given the all clear. Ten years of normal paps and not even a thought of cancer.
Life before my diagnosis: We were really excited to be pregnant in 2018. I had an ectopic pregnancy many years ago so getting pregnant naturally was a feat in itself! I had also just turned 40 and felt like my fertility window was closing. My husband is older than me and we were getting to the point in our lives where we had started talking retirement, not diaper duty. Life was good! Baby planning had commenced.......until there was no heartbeat. Not what you want to hear on ultrasound day. I’m a Physician Assistant, and I can read ultrasounds, and I knew. It’s a blessing to know but it also sucks.
A few months prior to getting pregnant I was plagued with what I thought were chronic UTIs. When I first went to an OBGYN for my pregnancy, I was given the option to defer a pap until after pregnancy, bad idea. A few months later, after I suffered the miscarriage, after a D&C and several biopsies I was diagnosed with adenocarcinoma in situ. The “cause” of my UTI symptoms was discovered.
How I felt after diagnosis: I felt pretty crushed after my diagnosis. I knew any chance of having another child was gone. It was very hard for my parents. My parents had already lost two out of five children. My mom had a stillborn many years ago and we had lost my 33 y/o sister in 2014 to stomach cancer. We are all in the medical field, which is a blessing, but it also sucks because you know what cancer can do. In my former career I was a firefighter and to this day I continue to lose coworkers to cancer. Which is why a few years back I made a career change and became a Physician Assistant so that I could be home with my family and have more kids and not have to have to deal with the increased risk of cancer. Little did I know it was too late.
Telling my family and friends: Telling my parents was really hard. I was sad for them because I knew they would worry. It was also kind of embarrassing. You feel like it’s your fault because of the negative stigma HPV carries and its relation to sexual activity. Coming from a somewhat judgmental and conservative family it was tough but I got through it and everyone was supportive and things were okay. I was also kind of pissed because I tried to protect myself and I hit some roadblocks. I wanted the Gardasil vaccine, I was diligent about annual pap tests and screening exams and I still got cancer. And even though I am medically educated I didn’t pick up on the subtle signs and if I had waited longer for the pap, things could have been worse.
My treatment: Because I was pregnant when this all started it was a longer process to get things figured out. However, once I was officially diagnosed and saw gyn-onc I had my hysterectomy within a months time. There was no option given to try to get pregnant again. It was too risky to wait since I had several biopsies with positive margins.
How I felt after treatment: Recovery was difficult. I took several months off of work. It took a long time to feel “normal” again. I had a lot of inguinal pain from where they messed with some lymph nodes and constantly felt like my bladder and vagina were falling out. Sex didn’t happen for a while since my purse stitch was pretty painful. I’m a very active person and I love running. This whole debacle sidelined me for about a year. During recovery I did yoga. It helped a lot with core strength and my mental health. I’m very glad I decided to pursue that when other forms of aerobic exercise were not possible.
What was most difficult for me: Losing my ability to have kids. Knowing that growing my family was over. Feeling like your life is changing and perhaps coming to an end sooner than you had planned. Worrying about not being there for my kids. My sister left a three and five year old and I didn’t want to do that to my kids.
What I did to help myself: I developed a plan of action. I had a plan A, B and C. I learned this from my sisters cancer journey. She was very brave and I think it helped her stay positive. Her plan C was the contingency plan, if things didn’t go well. It’s always good to have a plan and to be willing to change course if the first plan doesn’t work.
I did a lot of research about treatment options, I asked a lot of questions. I was my own healthcare advocate. If you don’t have one, if you don’t have medical knowledge, get one. I was lucky that I immediately felt very comfortable with my gyn-onc and did not feel the need for a second opinion. Get a second opinion and find someone that can help you navigate the health insurance nightmare. It takes a lot of stress off of you, the cancer patient, so you can focus on healing and thriving and not stressful financial issues.
I read books and I kept busy. I read “The Light Within,” which is a book about a gyn-onc doctor at MD Anderson, one of her cervical cancer patients and their relationship. It was a book I could relate to as both a patient and provider. I also read “You have Cancer - Moving From Fear to Hope" - Hope after cancer is important. It helps you come to terms with cancer and it helps you move forward.
My life after cancer: Things are not the same but they are good. At the time I felt like I was climbing a mountain but now it feels like a mole hill. I’m still sad about not being able to grow my family but I have to count my blessings because I have two healthy kids and a stepdaughter with grandkids. Aging seems to have come quicker because of hormone changes and sex is not the same but we get by. I’d be lying if I said I didn’t wish I could go back in time and change some of the decisions I made or wish I could have figured out a way to get the Gardisil vaccine when I was younger. But lucky for me, just after my cancer surgery the Gardasil vaccine was approved up to age 45. I got that shot as soon as I could!
Recovery took longer than expected but with patience things returned to “normal.” I did yoga for the first year after cancer surgery and started back to running slowly. I still struggle with interstitial cystitis but things are much better. I was just told after my last visit instead of every six months I can come annually and hopefully after that every 2-3 years!
Where I am today: I still struggle. I have interstitial cystitis related to my cancer surgery. I have to pee twenty times a day and have to get up at night. It’s a wonder I have not legit hurt myself walking to the toilet at night feeling like a zombie. I had some bladder irrigation treatments that helped and have tried some holistic remedies like aloe supplements and menopause vitamins. It seems that exercise actually makes the cystitis worse but I’m not willing to give that up yet. I’m still seeing urology regularly but gyn-onc appointments are annual now.
What I want other women to know: None of us know when our journey is going to end. Cancer is heartbreaking and it’s hard but even during the toughest of journeys, have hope and stay positive. Ask for help! There are good people in this world despite what the news and social media will tell you, people want to be there for you!
Everyone has challenges, we all have struggles but through this we gain strength. Have faith, read, challenge yourself. It’s hard to look at cancer and see that something good will come from these hardships but if you believe as my sister did that, “God has a plan for all of us, it’s going to be ok.” This battle is something you can get through. Believe that. You have infinite strength and you are loved.
How I will try to help others: I would love to mentor others who are going through the same thing. I also love to teach and hope one day I can contribute in some way to educating others about cervical cancer.
I work as a PA in Pediatrics and I am grateful that in my practice the Gardisil vaccine is widely available and parents are receptive to their children receiving it. I don’t tell people my personal story but when I get to talk about cancer, it hits home. My kids will be vaccinated and I hope with vaccination others don’t have to go through what I did due to HPV.