How my story begins: I always went for my well woman exams yearly. I had an exam in December 2015, just before changing jobs. Toward the end of that month, I received a call from my gynecologist telling me that my Pap smear was abnormal and that she wanted me to have a biopsy. I scheduled the biopsy without much worry. It was just a biopsy. During the biopsy she said she didn’t see anything of concern. The next week I got the results: it was cancer.
Life before my diagnosis: My name is Karen and I am a cervical cancer cervivor. My life before cervical cancer was spent enjoying my time with family, friends and my fur-babies. I worked way too many hours as a Registered Nurse. Just eighteen months prior to my cervical cancer diagnosis, I had both of my breasts removed due to early stage breast cancer.
How I felt after diagnosis: Hearing that I had cancer (again) made me just was to vomit. My mind went into overdrive. How was I going to tell my family? I’m starting a new job and I won’t have any paid time off. What will happen when my health insurance changes? Honestly, I spent most of my time asking, “WHY ME?”
Telling my family and friends: My strongest memory is having to tell my son, who was 22 at the time. I remember calling his roommate to make sure they were both home and to tell them that I was on my way over. With a tear stained face and red, swollen eyes, I knocked on the door. When Matthew saw me, he immediately knew it was cancer. I am a person that needs to feel in control, but my life felt like I was in the middle of a tornado.
First things first, I needed to research so that I could begin to understand. I have to ‘get it’ myself before I could tell my extended family and friends. I knew from personal and nursing experience that the LAST thing to do is to “Google it.” Too many times people read misinformation - causing further confusion and possibly further risk to their health. Many late nights of insomnia and worry I spent researching. I read information from medical schools, medical and nursing journals, and cancer organizations. I researched cervical cancer stages, treatments and risks of re-occurrence. When the time came to tell everyone, I did feel a sense of controlled chaos.
My treatment: The first two months were spent meeting my gynecological oncologist and getting more testing done. In April 2016, I went to get a robot-assisted hysterectomy. I remember waking up in the recovery room asking my nurse what time it was. It had only been an hour since surgery had started. CRAP! I knew that wasn’t good. I immediately began to feel for incisions—none. BIGGER CRAP!! Many will say that doctors are the worse patients, I will admit that nurses can easily be in the top five. I bombarded my nurse with question after question. I knew he wasn’t allowed to answer them, but it didn’t matter. The cancer had advanced to where I was going to need chemotherapy and radiation, I was finally told. I learned that my cervix tumor had grown. Once I woke up enough to have my family with me, I ‘mom lectured’ them that I needed them and required their love and support.
We spent the next few weeks learning about the treatment plan, meeting my radiation oncologist, getting a port put in for chemo, selecting radiation times and chemotherapy days. I let my boss know that I would be out for about three months. She actually was willing to hold my job for me. My family and friends set up fundraisers, signed up to be drivers, cooked and froze meals.
Every weekday morning I went to radiation that lasted about five minutes. Wednesdays were more intense. I met with the radiation oncologist before treatment. Then we would go on the other side of the hospital to my gynecologist oncologist office for chemotherapy. I carried with me a notebook, calendar, coloring books and my “Team Karen” blanket. I spent my chemo time napping and feeling well taken care of.
Chemotherapy didn’t make me lose my hair, but it did cause severe nausea. To this day I cannot stand the sight of Goldfish crackers. Radiation caused me to be severely exhausted and have severe diarrhea. I actually called the diarrhea “liquid death.” There were a few trips to the emergency department because of nausea and dehydration. The day of my fourth internal radiation I was at my worst. I’d had liquid death and vomiting all night without any relief from my medicines. I started having muscle spasms. My hands curled up and I could barely walk. My family managed to get me into the car. The spasms hurt so bad, I was so scared. When we pulled up to the hospital, I had use a wheelchair to get to registration. The staff was wonderful and banded together to care for me. Come to find out, my electrolytes were critically low. I had the treatment and spent the night in the hospital. There was only one more week of treatment to go.
How I felt after treatment: Treatment finished the last part of June 2016 and I returned to work. I was exhausted and had no energy. What normally took me 15 minutes took close to an hour. I stayed late to finish charting. My legs felt so heavy like there was concrete in my shoes. I worried that I was going to get someone hurt from being so tired and slow. I spent most of the night crying. I physically and mentally hurt. By the end of the year I had lost my job and fell into a severe depression. My psychiatrist changed some medications and had me start seeing a counselor. When I saw my gynecologic oncologist, I was convinced that the cancer had returned. I told him about my legs and was diagnosed with lymphedema. The radiation had damaged the lymph nodes, causing my leg to swell and feel heavy. He assured me that the testing showed no evidence of cancer.
What was most difficult for me: The lingering after effects are the hardest for me. It's like getting stuck in a spider web. One moment I'm feeling good, then I get tangled up.
What I did to help myself: I worked at letting some of my control needs go. I found that giving my loved ones the ability to control gave them a way to help. I napped when I wanted and cried when needed. I also spent quiet time in nature to de-stress and breathe. Keeping my 'Team Karen' blanket near at all times helped me when I got cold. I still use my blanket to this day.
My life after cancer: In the past three years, I’ve had to have repeated biopsies because of abnormal Pap results. I’ve seen a gastroenterologist, a urologist and an orthopaedic doctor along with my psychiatrist and counselor. I’ve been diagnosed with radiation colitis that causes me severe abdominal pain and diarrhea. I’ve had to have my hip replaced because of a tear in the cartilage that wasn’t repairable due to the radiation. I’ve had blood in my urine. Of course, the depression and panic attacks are debilitating. I also have been diagnosed with lymphedema of my right leg. I have to elevate my legs four times a day for 40 minutes - above my head mind you! I also have to wear compression hose and a machine that pushes the fluid out of my leg every night.
Where I am today: These days I’m working at keeping my head together. It’s one day at a time and sometimes one minute at a time. With the help of my family, friends, medical teams, and Cervivor sisters, I am "cerviving".
What I want other women to know: The main thing I want people to know is that HPV is preventable. Cervical cancer, penile cancer, oral cancers of the tonsils and soft palate are all preventable. Yes, I said preventable! Prevention with an immunization. Simple as a tetanus shot or your flu shot. It’s two or three shots at your medical providers office. It’s available for ages 9 to 45, and for males and females. I also want other cervical cancer patients to know first and foremost you are not alone and that there is a community of Cervivors. We offer unconditional support and understanding. We educate and advocate for HPV prevention and cervical cancer awareness. I am proud to say that I am a Cervivor Ambassador.
How I will try to help others: My goal is to advocate to my fellow medical providers so that they will educate their patients and friends about HPV prevention and about the importance of getting yearly exams. I am also going to talk with my local and state government representatives to help enact legislation for cervical cancer awareness and HPV immunizations. I also encourage anyone that has questions about HPV, cervical cancer, or HPV immunizations to reach out to me. I am willing to share my story with your friends, family, coworkers, anyone.
Read Karen's blog on battling and surviving both breast cancer and cervical cancer:
"On Being a Survivor and a Cervivor"