How my story begins: I was an active, married mom of 6 with 2 grown kids, 2 teens, and 2 little ones. We had just relocated to Arizona with big plans. I was finishing my Masters in Mental Heath Counseling and had already began working on my PhD in Clinical Psychology. I wanted to be "Dr. Paula," the one who made a difference.
I had some heavy bleeding and went looking into a uterine ablation. Prior to the ablation, a D&C was required to biopsy for irregularities. A week later, I was called to come into the office. They refused to tell me anything by phone and I just knew. My stomach dropped and I tried so hard to stay positive but I just knew. I only had to wait in her office a couple minutes before she told me that I had endometrial cancer (yes, keep reading). I don't remember anything else that was said other than hysterectomy, which I wasn't necessarily against as long as I kept my ovaries. I met with the oncologist a few days later and he explained I would need a radical hysterectomy with removal of my ovaries as well. I was told that as long as the cancer was contained, I wouldn't need chemo or radiation. Just 10 days after I was diagnosed, I underwent a robotic radical hysterectomy. I woke up drenched in sweat...so began my surgically induced menopause. That sucked!!!!
A week later, my oncology office called to give me the pathology report. The report stated that my cervix was covered and I was diagnosed as Stage 2b Adenocarcinoma of the cervix. I just sat there in silence.... I thought she had the wrong patient. I asked her to check again because I had endometrial cancer, not cervical! I'll save this from being a very long story... I never got any real answer on what happened, where the error was made, or if there was an error. I was told since they weren't aware of cancer on my cervix, they cut through it leaving unclear margins. NOW I needed chemo and radiation. So began the beginning of what would become my nightmare into my new normal.
How I felt after diagnosis: I was numb after first being told about the cancer, but honestly I didn't mind the hysterectomy. I had so many abnormal cycles and heavy bleeding that I was okay to say goodbye. I didn't want to lose my ovaries, but with endometrial cancer, it was required. All I felt after the misdiagnosis was pure anger and disbelief. The lack of answers made me doubt both diagnoses. The second opinion I received told me that I should go by the most recent, which meant I was wasting time and needed to start treatment right away. I was lost, scared, and terrified at this point that I could die. It was finally REAL and very, very scary. I didn't "grasp" what cancer meant until that moment.
Telling my family and friends: I waited a few days and finally told my parents. My dad took it hard and some days, I still regret ever telling him. I posted on Facebook for my friends. They all seemed supportive, but then again, everyone is at first. I didn't say much about my diagnosis changing to cervical cancer though. I was very embarrassed about it. I didn't know much about HPV as none of my doctors ever mentioned it. Whenever anyone asked, I said I had the "non-HPV kind." I just assumed that if I had HPV, someone would have said something.
*side note - more advocating needs to be done for doctors to educate about HPV
My treatment: Treatment was rough. The same day as my very first chemo treatment, my mom called to tell me that my dad was in the hospital but should be fine. The next day, I was told he was sicker but should still be okay. The 3rd day when chemo finally hit me, I was told that my dad was being transferred to hospice. I immediately got on a plane and was able to spend 18 hours by his side before he passed. Those 18 hours were mixed with exhaustion and nausea. I couldn't leave my mom who has advanced Parkinson's, so I stayed with her until she was ready to fly back home with me 10 days later. After I was home, I broke down. Everything (cancer, my dad's death, his death making me feel how fragile we all are, my losing him and not wanting my children to lose me, etc.) came crashing down. I had a breakdown of sorts. It was so bad that I had seizures. I didn't go back to treatment until 3 months later. I started over with 28 scheduled external radiations, 5 internal radiations and 6 chemotherapy treatments. Chemo and I didn't get along and I ended up in the hospital a few days after each one with an infection. I completed all 5 internal radiations, but did not complete external or chemo. I still had 12 radiations and 2 chemos to do when I just put the brakes on and quit. My body and I had enough.
I had a PET scan done in June 2013, which my radiologist said for me to "prepare for bad news and spread since you didn't complete your treatments." The results came back NED (no evidence of disease). My Dad was clearly looking out for me there!
How I felt after treatment: I was relieved for it to be over. I was anxious to return to our previous life with my weekly trivia night out with friends, schooling, horse training, and being an active mom again. That never happened.
A few months later, I began getting sick and repeatedly was admitted into the hospital, sometimes for weeks. I had chronically low potassium and magnesium, but they were looking for a gastrointestinal cause that they couldn't find. Eventually, it was found to be wasting through my urine. It was officially called Gitelman-like syndrome after Cisplatin therapy. Cisplatin is the name of my chemotherapy drug. This side effect is extremely rare but it causes the area of the kidney that regulates your electrolytes to just pass straight through your kidneys and waste it in your urine. I required another port and high levels of magnesium IV to be ran at home every 12 hours. I lived on an IV attached to me for nearly 3 years. I had numerous sepsis infections from the port and ended up with 5 replacement ports and 2 picc lines before we gave my body a break. Now I've stabilized some and take A LOT of oral mag and potassium. I have to be very careful to avoid dehydration though.
What was most difficult for me: Realizing that not everyone was going to stay close. While many friends were supportive and helpful in the beginning, it was friends that I never expected and lived far away who stepped up. It was hard being in the hospital alone without visitors. I hated my life and got very depressed. I had to sell my horse and couldn't drive, which meant my children couldn't do anything but go to school and back. I had a very hard time adjusting to my "New Normal."
What I did to help myself: I buried myself in my online support groups. I didn't have local support so I cherished my online support. I became a Girl Scout troop leader so my daughter could join scouts. If she missed too much from not being able to take her, I could help her at home this way. I got my son into riding lessons so our family still had access to horses. Lastly, I joined Cervivor. Through Cervivor, I have discovered that I can still be the person who makes a difference. I can advocate and educate others, as well as just talk about cervical cancer and HPV. That stigma needs to disappear.
My life after cancer: My post-cancer life is just beginning. I am 4 years NED with one more year until I reach my 5 year remission. I need to start planning that celebration. I'm grateful for my chance at life and learning new ways to live.
Where I am today: I still get tired pretty easily and still live in a lot of pain, but I'm grateful for the life I have. I just learned how to say "no" and how to stop an activity if I get worn out. I can go from fine to not fine pretty quickly, so I'm always on guard.
What I want other women to know: It's not your fault.
You are NOT alone.
I'm here for you.
The next generation has the ability to be the first without HPV and HPV-caused cancer.
How I will try to help others: I would like to educate other vax-hesitant parents about the HPV vaccine and share the proven statistics with them. I plan to have an active role in Cervivor by hosting health fair booths, talking to others about cervical cancer awareness, and doing my best to do my part to decrease the stigma. There shouldn't be a stigma about home base.