How my story begins: I went in for my check-up as I never missed one and had a long record of perfect Pap tests. Annual Exams were a good habit I started several years prior because it was recommended by my ObGyn. When the doctor did my pelvic exam, he noticed what he thought was a "fibroid" bulging from my cervix and he called his partner to take a look. As tears were flowing down my cheeks, they both assured me it was “NOT cancer” and told me to come back in 8 weeks unless it were to burst and bleed. They did not want to biopsy it that day because it was very vascular and it would cause a lot of bleeding. Since it was summer and I was a first grade teacher, I asked if we could take it out sooner than later. It was as if an angel told me "Get this out of your body NOW!"
So glad I listened to that Angel Voice in my head. Within a week, I had the mass removed at our local hospital. Oddly, it fell apart in the doctor's hand. He decided to send it to pathology even though he STILL thought it was not cancer (adenocarcinoma does not look like typical cervical cancer). I am so grateful to this wonderful doctor for sending the tissue so it could be analyzed.
The next day, I got the dreaded call to come in to speak to the doctor and the nurse would not elaborate any further. I was told to bring my husband as well. My heart was beating out of my chest as I knew this was not a good sign. The next thing I remember was hearing, "You have cervical cancer. You will need a radical hysterectomy, possibly chemo and radiation."
My world was forever changed and I began my journey through the unknown territory of cervical cancer. Life would never be the same again and I did not realize how much I would grow and change over the course of my journey. As I type this, that memory still makes me tear up. It was a defining moment for me--the day that my life went from B.C. (Before Cancer) and A.C. (After Cancer). As I heard the doctor sharing the bad news, my life flashed before my eyes. The doctor's words seemed to echo as I was swallowed by the reality of my cancer diagnosis. What started out as a supposed "fibroid" that was "not cancer" ended up being diagnosed as "Adenocarcinoma Cervical Cancer 1B2."
This same day, my Pap test results arrived in the mail. My Pap test was still NORMAL even with a 4 cm tumor bulging from my cervix (Adenocarcinoma grows up higher in the cervix and it is harder to find the glandular cells). Had the mass not been bulging, they say I would have gone home and been dead within a year. That pelvic exam saved my life. Even if you are not due for a Pap test at your annual exam, you should STILL get your pelvic exam each year.
Life before my diagnosis: I was a busy 31-year-old mother of two (3 year old and 9 month old) and a first grade teacher. Life centered around my family and students. I felt fine other than what I thought were c-section recovery issues. I was not a smoker or drinker. I was not overweight and I took pretty good care of myself other than being sleep deprived as a Mommy. I had never been through any real life-threatening illness. I was naive to think cancer would never shake up my world.
How I felt after diagnosis: I was afraid of what my body would go through. At that time I had a low pain tolerance. I was very sad because I wanted more children. Don't get me wrong, I am beyond blessed to have my two babies already. By the grace of God--they were born before this ugly tumor inhabited my body. I didn't like cancer taking away my fertility or my female parts. It felt so unfair. I was not embarrassed about the HPV factor because I didn’t even know how I got this disease and it seemed the doctors really didn't know either. HPV was hardly discussed in 2005. I was clueless as to what was in store for me and I felt so fearful of the unknown. I did not have anyone to lean on that had experienced cervical cancer before and I felt like the only person in the whole world going through this. My mind wandered and imagined the worst.
Telling my family and friends: I have a pretty good sense of humor, so I used this to my benefit. I joked with medical professionals and friends to lighten the seriousness of the situation. But deep down, I was very afraid. I tried to hide from it and in some ways, I went inward-inside my head to deal with my fear. My kids were too little to know what was going on and soon I would be facing surgery and treatment. I had to focus on me and that meant passing my children off to family for a while. This was so hard to do. I used to cry in the basement in a pillow so nobody would hear me. I was keeping much of the sadness to myself.
My treatment: I was diagnosed in July 2005. The next three months were a blur to me. We sought out 4 different opinions as to how to proceed with my treatment. I had my radical hysterectomy on August 19, 2005. It was a grueling surgery for me. The incision goes from my lower pelvic area and up and over my belly button. They removed my cervix, uterus, 1/3 of my vagina, appendix, and 44 lymph nodes that all came back clear. I went home with a catheter hanging from my lower abdomen. I had to retrain my bladder as the surgery cut very close to the nerves.
This was a very difficult time for me, as my children had moved in with family since I was too sick to care for them or even lift them. I spent many nights crying in the baby room, missing my babies. After I healed from the surgery, it was time to receive five weeks of IMRT guided external radiation. The radiation is what put me into a sudden menopause, which I truly hate. Our hormones do so much for us! Radiation made me sick, but I made it through with the help of pharmaceuticals, wonderful medical professionals, and family/friends. I felt like someone had stuck a knife up my behind (twisting and stabbing me) and my bladder felt like my urethra was on fire. Sorry to be so graphic, but the pain was terrible. I was so grateful for the medication to ease the discomfort. I wanted to sleep through all of this and life seemed to stop for me. I became very depressed. I do believe hormone imbalance made things worse because it wasn't like traditional "Going Through the Change" menopause. It happened abruptly and my body didn't know how to cope.
How I felt after treatment: I would like to say that once I beat the cancer, it was over. However, the hard part came later. I remember feeling that I was on overload trying to keep it together. As I share my story, I want very much to emphasize how important it is to deal with the emotional/hormonal/spiritual side of being a "survivor." I marched right past the survivor desk in the Cancer Treatment Center of my hospital. Perhaps I was too busy or maybe I thought I was strong enough to keep marching forward. That was a mistake for me. Soon it would all come undone and I would hit a brick wall. Being strong doesn't mean you won't eventually break.
What was most difficult for me: Finding the NEW Shawna was very hard because I missed myself. I missed being healthy, energetic, and happy. I did not know how to deal with all that had happened to me in such a short time. Three years after the cancer treatment, I suffered a breakdown that can be attributed to a variety of things. Was it hormones? Was it exhaustion? Was it depression? Was it ADHD? Why was the old Shawna not the same?
My marriage was in shambles and I felt I had failed in so many areas. Research states that Cervical Cancer patients have the highest divorce rate of any female cancer and I understand why. After cancer, I just was not the same person I used to be. My body was having accidents due to radiation damage and I was extremely tired. I was not able to roll with daily life as I had before the cancer--it all felt too hard and too complicated. I was exhausted. I had no sex drive and wanted to trade my body in for a new one. I wanted to feel normal again, whatever that meant. I wanted to love myself again and feel confident in myself as a wife, mother, teacher, and friend. I was literally walking around as a shell--a fraction of who I used to be. And I needed to deal with it all. I don't remember this time of my life very well because I was just trying to get through each day. And on some level I felt as if I was “defective” or undesirable. In some ways, I was broken open with grief. Why did my body fail me and could I love this new version of Shawna? Why did I mess up the plans for my family by getting sick?
What I did to help myself: After meeting with a wonderful doctor, who was the lead oncology psychiatrist at a prominent hospital (specializing in cancer survivors)--the puzzle began to make sense. At the crux of all of this adversity was a diagnosis that often mimics Depression/ADHD---I had PTSD due to the cancer experience. Discovering this was the beginning of my healing. I worked feverishly to overcome the issues I was having. She told me, "You have to dig down deep. You know your dress size does not matter. That is not important. You have to look within yourself to find what is important. You have to find the NEW Shawna and love her. You need to stop waiting around for certain people in your life to tell you it was okay that you got cancer because that is NEVER going to happen." She told me I would make a complete recovery, but I had to work hard to attain that goal.
After reading many books, working diligently through therapy, taking a year off from teaching first grade, using bio-identical hormone management, getting support from people who could embrace the "new" Shawna, and praying a lot---I have rebuilt my life as something beautiful again. The NEW Shawna is much like the old one, but I am stronger, wiser, and more empathetic, and I know the pain of adversity. I remember what it feels like to want to pull myself up by my bootstraps, but realizing I didn't even have any boots at the time. I will never forget what that felt like to be clawing at the walls trying to overcome my struggles. I did not give up. I wanted to heal. I was chasing after the joy I had lost along the way.
My life after cancer: Survivorship is something I embrace every day of my life. At times it is an overwhelming struggle to manage post cancer long-term side effects. Lymphedema, pain, hormone management, and urinary/bowel issues are a few of the challenges. I am so grateful for my amazing medical providers. Chronic pain has been the hardest part for me to manage as it messes with my stamina and emotions. I don’t always feel as dependable as I would like to be as my body makes decisions for me in terms of what I can accomplish in a day. At any given time, my brain is three steps ahead in planning so I can feel well that day. I am happy to say I don't get triggered with every little cancer memory like I used to in 2008. Facing difficult memories with grace is God’s way of reminding me of how far I have come. I am an OVERCOMER and that makes me one amazing CERVIVOR. I worked so hard to find myself again and become the person I am today.
Where I am today: My life is so different compared to BEFORE the cancer. Managing my weight and figure used to be very easy before sudden menopause and I took hardly any medication to feel my best. Today I take bio-identical hormones, meds for menopausal acne, vitamins for heart palpitations, daily bowel meds, meds for chronic pain, and a variety of vitamins to promote wellness and energy. I advocate for myself and research all the time. Much of my life is impacted by my medical issues and managing all of it is multifaceted. I persevere in spite of the difficulties and if that means I have to put myself first, I am learning to accept that it is okay for me to do that. I have found what works for me to keep my post cancer body in top shape as I have lost 50 pounds in the past 3 years. I am kind to myself and I still allow myself to grieve when I need to do so. The loss is still there, but it does not hurt as badly as it once did.
In some areas of my life, I have had to step away or take something off my plate because I was trying to keep up with a pace that was not healthy for me (physically or mentally). I will no longer force myself to stand or sit when I am in pain and pretend like I am fine because I want people to see me as someone who has it all together. Because honestly, some days I hurt so bad I don't want to get out of bed and I feel like my body is falling apart. I am learning that I have to call the shots for what works for me. I attend physical therapy, use my Lymphedema pump, wrap myself in heating pads, enjoy warm baths, take meds if necessary, and I am always grateful to put my legs up or receive a leg/foot rub from my boyfriend. He encourages me to put my health as a top priority because if I don't stay healthy, I won't be able to live a long and fulfilling life. I deserve to feel well and I won't apologize for wanting that for myself. I surround myself with people that are supportive and I speak often to my mental health therapist about ways I can continue to grow as a person.
What I want other women to know: I have always been a Chatty Cathy. I like to share my story and my passion for sharing the good news about the HPV Vaccine and the importance of preventative care in relation to female health. I want to eradicate this disease and prevent anyone else from losing their fertility or hearing the words, "You have cervical cancer." because it does not have to happen. As I learned at Cervivor School, this is a human issue. We have to change the narrative about HPV/cervical cancer and 80% of people have HPV and don't even realize it. Using our voices to spread the word about our experiences and the news of a vaccine that prevents cancer is an exciting mission!
How I will try to help others: Ask questions and network with other Cervivors. Don't go through this alone. Sometimes a partner does not know how to support someone going through cancer and they may not have the tools to be a caregiver. Support can come to you in other ways. Other Cervivors have been through similar issues with their own CC journeys. Knowledge and networking will EMPOWER you. While many of you may not experience PTSD or any psychological issues from your cancer, be on the lookout for those who may develop these symptoms.Trauma can show up in different ways. Please know that time, support, and prayer will help you find your way.
Even after 15 years, I am still learning how to “walk boldly in my Cervivorship” and become the best version of myself. I have been embracing my own self care and allowing myself to take a knee when it is best for my health. My body tells me what it needs and I just have to truly listen. Don’t be afraid to modify your lifestyle to omit toxic people, or reduce your daily schedule to meet your needs after cancer. I try very hard to give myself grace when I am falling short in the eyes of others or even myself. They are not living my life and it is not my job to justify my health issues to those who don’t understand. As cervivors, we have to practice “self care” in all ways.
Any additional information you'd like to share: Sex can be amazing again after cancer. It can be 100% fulfilling with a supportive and patient partner who loves you in spite of any issues you may have with your sexual or physical health. Don't let anyone shame you for your issues or belittle you in this area. You are beautiful just the way you are (scars remaining and pieces removed). You have been through so much and you should be celebrated by a partner that loves and validates your experience. Without a supportive partner, it is very hard to celebrate your new self. I consider myself: Shawna 4.0!
Find a partner that connects with you on all four levels: Spiritually, Intellectually, Emotionally, and Sexually. In their arms you should find a wonderful place to feel SAFE and LOVED. You deserve that kind of happiness. A person that has rid their body of cancer should not allow someone in their space that is like a “cancer” because that will only make you sick emotionally. Do not stay in a relationship just because you think nobody else would want to love you or accept you as a Survivor. Those are lies we tell ourselves because we are afraid we are not enough--that we won’t measure up. You ARE enough and you deserve a healthy relationship where you feel SAFE and LOVED. You can still find self confidence again and have it going on even after cancer. Give. Yourself. Time.
Don't get me wrong, I hate cervical cancer and I wish I had been able to receive the vaccination when I was a preteen; however, I am extremely proud and humbled to be able to call myself a CERVIVOR. Both of my kids were vaccinated.
Attend CERVIVOR SCHOOL and find your voice. I have a story to tell and a mission to eradicate this cancer through education and HPV awareness. Every story matters and every life we can save through advocacy is a life changed.
PLEASE schedule your exam today if you are due (also remind your loved ones to do so) and remember Preventative Care saves lives.