How my story begins: My story started in September 2015 when I went for a routine physical. It had been several years since I had taken the time to do a physical and well-visit with my primary care doctor. Although I only ever had two sexual partners, I asked for an STD test because of the way my last relationship had ended. I did it out of precaution and urging from several people close to me, never thinking I had anything.
The following week the nurse called me and told me that my Pap showed abnormal cells and that I had tested positive for HPV. I was referred to the gynecologist where he wanted to do another Pap since the first one was close to my menstrual cycle. The 2nd Pap also came back with abnormal cells. The gynecologist kept saying things like, "We usually don't see these types of cells in women your age. I just don't believe this is something to worry about." I was scheduled for an in-office colposcopy and biopsy, and those biopsies came back ALL showing the same thing.
At this point, he was more concerned and wanted to do a cone biopsy. He was alarmed, but kept telling me that usually the actual cone procedure could get all of the cells and if not, it would be a guide for him to see where else they could be and he could cut them out. However, when my results came in, the entire piece was cancerous-indicating that cancer was surrounding the area. The question was to what extent. My gynecologist referred me to my current gynecologist oncologist and from this point on, my life changed drastically.
Since I had the cone procedure, I had to wait a month before I could have a PET scan. I lived for a month with the knowledge of knowing that I had cancer that had possibly spread, but not knowing much else. My oncologist and I had sat down and talked about possible scenarios. She was encouraged and hopeful that we could eradicate it with either a radical trachelectomy or hysterectomy. However, when the PET results came in, surgery was not recommended. Cancer was in the entire cervical canal and the tissue surrounding the cervix. It was impossible to know how far in the tissue, but it was good to know other major organs were clear. She put me in Stage 2B and I started chemotherapy and radiation, followed by internal radiation.
Life before my diagnosis: Thankfully 4 years prior to my cancer diagnosis, I had decided to make some lifestyle changes. I started eating healthier and living an active lifestyle. Running became a huge part of my life, not just for weight management, but for clarity of mind and stress relief. One of the reasons I had chosen to change my lifestyle was due to my age and the fact that I had not yet had children. I knew I wanted to have a baby, but age was creeping up, and if I was overweight it would make things even more difficult. I wanted to feel good and have the best chance possible whenever that time presented itself.
I am a public school Pre-K teacher. So before cancer, my days were full - full of caring for my students, being a learner for them and myself, being active, traveling, being available for friends and family. I really was a person who gave a lot of myself to others on purpose. Cancer shifted most of these things drastically.
How I felt after diagnosis: I will be honest. After diagnosis I was really scared of the unknown, but I didn't allow myself to think much about it. I lived in the day to day, sometimes moment by moment...just doing the next thing. Fight or flight kicked in and I fought. I fought to the point to where I tabled the things that I was losing with cancer. For example, the dream of having a biological child was being taken, so I could live. During treatment, I could not allow myself to fully process what that meant to me. I only had a limited amount of energy and I needed every drop to fight cancer. I had a counselor that I saw bi-weekly to help me stay focused and mentally healthy. Occasionally, I would allow myself to feel during those sessions and then I would table it again-in order to be able to get back out there and fight. I could not be the person I was before-giving and pouring into others. I had to learn how to set boundaries and be around people who were life-giving.
Telling my family and friends: For me, THIS was one of the hardest parts of cancer. Inside, even though I was afraid, I felt like I could do it. However, when I told family and friends, even if over the phone, I could hear the air let out of their bodies. I could hear them fighting back tears in their voice-trying to stay positive for me...but really for themselves. I hated telling the people that I loved that I was sick. I hated seeing them struggle with the balance of fear and staying positive.
At first, I kept it to just those very close to me-but eventually found that it wasn't very "me" to not tell people. I didn't WANT to tell people mainly because of the kind of cancer it was, but cancer is pretty difficult to hide AND again it just wasn't "me" to not share. I felt the shame and stigma of an HPV-related cancer. But again, I couldn't HIDE it...it's cancer! SO I slowly started talking about it as I felt comfortable and eventually found strength to share. The more I shared, the stronger it made me.
My treatment: My initial treatment was chemo (Cisplatin), radiation, and HDR internal radiation. My first PET scan after treatment showed that cancer remained. So I had a radical hysterectomy and lymph node dissection.
How I felt after treatment: After completing chemo and radiation, the weight of what I had just been through started to feel heavy. I mentioned above that I had purposefully tabled a lot of the fear and grief in order to fight the fight. When treatment ended, it was waiting for me. While I was relieved that treatment was done, I had to create space and be patient with myself in processing having cancer and going through treatment.
Unfortunately, just as I was getting my head around that, my PET scan was positive and I had to have surgery. Surgery after radiation is risky and I have had a slow road to recovery. I have developed a couple of infections and even an abscess from surgery. So there have been hurdles. I continue to learn to be patient with myself and on days that are hard, I have to dig deep to remember that this is not the end. I am here. Healing may be slow, but my oncologist actually used the phrase "cancer free" in my initial post-op. Recovery has been slow, but there is much to be thankful for and to celebrate!
What was most difficult for me: Infertility and the side effects of radiation to the cervix. I continue to grieve the dream of biological children. I believe that everything happens for a reason and that this part of my story will be redeemed. But that does not take away the pain and loss of a dream my heart has wanted.
In addition, the side effects of radiation to the vagina and what intimacy looks like after treatment is hard to accept as a reality sometimes. I wish there was more written about how women cope and deal with this aspect, in addition to menopause. Along with those changes, the radiation complicated surgery and has made my recovery a very slow process.
What I did to help myself: I surrounded myself with life-giving people. I worked with my counselor to set boundaries with people, as this is not something that comes naturally to me. Prior to cancer, I was the one wanting to pour into others and I found myself with only enough energy to fight for myself. I had to let go of expectations on myself, and just do the very next thing-the very next round of meds, the next treatment, the next appointment. I lived in the now.
My life after cancer: Ironically, living in the "now" during cancer has helped me in life post cancer. I realize that life is fragile and I am motivated to do all the things that I had said that I would one day do. I realize that today IS one day. I have taken some of the lessons of boundary setting and patience with myself, and have brought them into this new chapter with me. I continue to process cancer all the time. I continue to work with my counselor, but I have also sought out local support groups, cancer nutritional services, and the local chapter of the National Cervical Cancer Coalition. I have also found Cervivor and plan to attend Cervivor school in 2017 to become an advocate and voice for cervical cancer and HPV-related cancers and prevention. I want to make a difference.
Where I am today: After my radical hysterectomy, I had a couple of complications with an abscess in my vaginal cuff, and right after a vesicovaginal fistula. The radiation damage to my bladder was extensive. I was completely incontinent and had no urge "to go." When this occurs, doctors will not operate until the fistula is well matured, so I lived in diapers for 4 months. In March 2017, I had the corrective surgery to repair my bladder and my vagina. The procedure was supposed to be a four hour operation, but ended up being nearly 8 hours long. My team ended up needing to graft an abdominal muscle into my bladder and grafting skin from my thigh into the vagina to repair the damaged area with "good tissue." I was catheterized for 6 weeks after and when all was said and done, the surgery was a success.
Three months later, I started experiencing severe pain in my kidneys and high blood pressure. It was discovered that I have stage 4 Chronic Kidney Disease. My nephrologist and urologist believe the CKD is a side effect of my chemotherapy combined with the hydronephrosis that was brought on during my fistula, when my kidneys could not properly drain into my bladder-and in turn, my bladder could not fully empty.
I am currently, adjusting to life with CKD and the lifestyle changes it brings. Due to the kidney failure, I am unable to have contrast with my scans. I am currently waiting for my first "official" scan since surgery and keeping fingers crossed that there is no cancer. Bad kidneys and chemo are a terrible combination.
I have returned to work in the classroom, but it has been made quite evident that I am not ready for the high energy and pace of early childhood. I am looking into other work options and hopeful that I can find my niche.
How I will try to help others: I want my story and even my pain to inspire others. I am confident that even though this road has been hard and I have had some serious loss, telling my story could make a difference for someone else. I want to educate people on HPV and HPV-related cancers. I want to encourage people to have "hard conversations" about things that matter but might be uncomfortable. I want to end the stigma and shame that many of us have felt with a cervical cancer diagnosis. I want to turn my pain into purpose.