How my story begins: I'd always had unpredictable, painful and generally debilitating periods my entire menstruating life, from the age of 9. But things started to get out of wack in late 2022 when I noticed my periods were flip-flopping between bearable and unbearable every other month. I'd made an appointment with my gynecologist in November 2022, but didn't go due to a major depressive episode I was struggling through that winter.
Around March 2023, after I had felt well enough to get out of the house and spend time with friends again, I began dating my boyfriend. One night, he and I were hanging out and I noticed I'd started bleeding a week earlier than expected. I chalked it up to my historically abnormal menstrual cycle, and thought it was just coming on early that month. But it wasn't a normal cycle. Over the next few days I began to bleed so heavily I was soaking through one heavy duty overnight maxi pad within an hour or two.
I had a gynecology appointment scheduled for the following week, and called to get in sooner. Even in my panicked state, I was told there was no other option but to wait to see my doctor. The day of my gynecology appointment, I was bleeding too heavily for him to do a pelvic exam. I was told I'd likely need a D&C procedure, but that with the Memorial Day weekend, there would likely be a wait. The next day, as my boyfriend and I walked to the car to bring me to the emergency room, I passed out on my kitchen floor and needed an ambulance to bring me to the local hospital not even 5 minutes from my house.
At the hospital, the on-call gynecologist detailed what a D&C procedure entailed, and I agreed to have it done. I thought the procedure was the worst of my worries. Little did I know that the doctor found a mass in my cervix while I was under anesthesia, and instead of a D&C I had a cervical tissue biopsy performed via cutterage. Once I woke up from anesthesia, another doctor came into the room and started throwing the Big C Word around. I was shocked and angry, but I also felt like someone had kicked me in the chest. I was confused, but also thought that maybe they were right.
Two weeks later, my pathology report came in. It was positive for moderately differentiated endocervical adenocarcinoma, linked to the high-risk HPV 16 strain.
Life before my diagnosis: Life before diagnosis was going really well. In April 2023, I'd chosen to leave a high-stakes marketing job in higher education and had begun actively pursuing the next big thing in my career. I'd also recently met and started dating a wonderful guy, while enjoying the new home I'd purchased just eight months prior to diagnosis.
My two cats were happy and healthy, and I had started making memories in my new home by hosting gatherings of family and friends for dinners and holidays. Lastly, my new boyfriend and I had a week-long trip to Las Vegas booked for June. Things were generally moving in a positive direction in my life.
How I felt after diagnosis: I went through the stages of grief pretty quickly. It took about a month for me to fully accept that I really had cancer, and that there wasn't any way out of it but through. At times I cried, at other times I couldn't believe it, and sometimes I screamed while crying. I felt a compelling mix of denial, bargaining and anger.
I was mad at the doctors who first told me I had contracted HPV when I was in college. They'd said, "Don't worry, it'll just go away over the next year or two". I was never told it was a high-risk strain, or that it could eventually lead to cervical cancer if it didn't resolve itself with time.
I was mad at the guy I'd dated during college, who I knew (even then) was the one who gave me HPV.
I was mad at my gynecologist for turning me away in 2020 for a routine pap appointment. I remember physically standing in the lobby for that appointment, which had been on the books for a year prior, and being told that screenings had been changed to once every three years and that my insurance would not cover that day's "annual" test.
Lastly, I started to bargain with myself for all the "what ifs". If only I'd advocated harder for answers every time I'd gone to the gynecologist in recent years, it would have been caught sooner!
I'd been going to the gynecologist nearly every six months complaining of ongoing cystic acne, increasingly heavy and unpredictable periods, painful sex and bleeding after intercourse, and lower back menstrual pain so excruciating I'd miss out on work days and activities with friends and family. Why didn't the doctor do anything besides shove birth control at me?
Why didn't I stand up for myself more aggressively? What could have been different had I just pushed a little harder for answers? All of these questions ran through my head on repeat while I bargained with my past self, looking for clues to a problem I knew I couldn't solve on my own. All the bargaining led to a brief stint with the Depression stage of my grief process, something that I'm glad subsided fairly quickly.
Then came the Acceptance stage. My boyfriend and I drove four hours from Indiana to the Cleveland Clinic for a second opinion on my diagnosis and to get a realistic perspective on my treatment options. We didn't like what we heard: the standard treatment is five weeks of chemo and radiation. I cried in the exam room after the doctor left, because it was the first time I'd been told what treatment would entail for my specific case. I thought I'd be having some form of hysterectomy and it would be over.
Once we got past the shock of my suggested treatment, we decided to do the things we wanted to do, so that when the time came for treatment, we'd have some positive memories to look back on, and more things to look forward to.
We took a trip to Chicago to take our minds off of my diagnosis, then went up to Michigan twice to spend time anywhere but home. All the while, I answered phone calls and appointment requests and emails to get things rolling. It felt like I couldn't escape my diagnosis, and I couldn't stop it from existing. But I could distract myself briefly until it was time to fight.
Telling my family and friends: I only told my immediate family and my very closest friends. My boyfriend told his immediate family and his boss and coworkers, as well as a select few of his very close friends. It's still something I haven't shared publicly. Being a fairly private person, I didn't want the attention associated with a big Facebook reveal, and I didn't want the mental load of having to rehash the diagnosis story or be reminded of my diagnosis each time I opened a social media app or looked at my phone's notification bar.
I chose instead to create a chat group in Facebook Messenger that included only the friends I wanted to know about my diagnosis. Then I wrote out everything in a concise format, so nothing was unanswered, and so that everyone had the same information directly from me, and at the same time. It was really hard for me to share the news. It took me until the week before chemo and radiation started to send the message, but the outpouring of support I received from everyone was worth the wait. I cried seeing how much my friends truly care about me, and seeing their willingness to help or lend an ear if I needed it was extremely soothing and comforting.
It was harder for me to tell my family. My mom knew everything from diagnosis day. I relied on her to tell the immediate family, because I just didn't have it in me. Once she told everyone, I felt comfortable enough to talk to my brother and sister-in-law, as well as my aunt and uncle, about everything. My mom really played an important part in my journey from then on.
My treatment: My treatment consisted of a diagnostic laparoscopy in June 2023 to more accurately stage my diagnosis. On my PET scan, one iliac lymph node had lit up a little bit, which made it suspicious for disease. So my gynecologic oncologist suggested I have my iliac and periaortic lymph nodes biopsied, along with my fallopian tubes, to be completely sure there was no spread outside the cervix. If any of the nodes was cancerous, I'd be treated for stage 3C1 cancer.
Also during the surgery, my oncologist transposed my ovaries upward, to prevent them from being sterilized during external radiation. About three days after the surgery, pathology on my lymph nodes came back. My boyfriend and I had just woken up, and I opened the report with bated breath. At the top of the report was a note that read "All lymph nodes came back negative for cancer!!!" I nearly jumped out of bed (which I couldn't have done anyway), and yelled at my boyfriend to come read the good news. We celebrated, we cried, and we called family to tell them. I wasn't stage 3 anymore, I was stage 2B. It was a huge relief.
About two and a half weeks after my surgery, I started treatment. This consisted of a very low dose of cisplatin once a week on Mondays to help the radiation work better, and daily pelvic radiation five days a week (Monday through Friday).
During treatment I had a few complications. There were two separate times when my blood counts were too low for treatment, which required blood transfusions. My ears started ringing the second week of cisplatin, so my doctors switched me to carboplatin for the rest of my chemotherapy. I had diarrhea so badly during my third week of treatment that I had to be hospitalized for dehydration. And my body had formed lymphoceles on either side of my groin, due to the radiation negatively affecting the healing of my laparoscopic surgery site. I suffered from a lot of groin pain every day, but Thursdays quickly became my worst days each week, because the effects of radiation are cumulative.
After external radiation and chemotherapy, my tumor had shrunk from 5 cm (the size of a lime) to 1 cm (the size of a pea)! I was so happy to hear the news, that I cried good tears for a couple of days. My family and friends couldn't believe it, and my boyfriend was beyond over the moon knowing things were going so well. My doctors said that I'd had such an amazing response, they were confident I'd be cured after brachytherapy, which would be my final stage of treatment.
I had five outpatient sessions of HDR brachytherapy via tandem and ring placement. This was done via MRI-guided adaptive treatment planning, which is such an amazing option that I'm so grateful to have had available to me. I was so afraid of brachytherapy that I didn't go to my first scheduled session. I had a panic attack the night before, and it took every ounce of bravery in my body to agree to go through with the treatments at all. I had seen and read horror stories of women's vaginas closing up, fistulas, ostomy and colostomy bags, bladder and bowel perforations, the list went on. I was also extremely afraid of losing my sexuality and my femininity, because radiation to the cervix also affects a woman's vaginal health.
Thankfully, my radiation oncologist made time to sit down with me and explain everything in detail, until I felt comfortable and informed enough to make a decision on whether I'd agree to the brachytherapy treatment. I'm grateful I agreed to have the treatment, because it will give me a much greater chance of living a cancer-free life post-treatment. And that's the most important thing to me right now.
My brachytherapy treatments start at 7 a.m. on Tuesdays and Fridays. I'm not allowed to eat or drink after midnight the night before treatment days, because I'm being put under general anesthesia during each session. My first session took a little over four hours, and involved an MRI and CT scan to plan for the exact placement of the tandem and ring equipment. Then my doctors and their colleagues reviewed the scans and confirmed the placement of the tandem and ring. The actual treatment and the process of waking me up afterward also takes some time. Each treatment thereafter has been about an hour long, and has been much more comfortable than external radiation.
The day of each brachytherapy session, my boyfriend and I take the rest of the day to nap and relax. I'd sleep most of the day each treatment day. However, by the day after, I start to feel pretty good! I have very little cramping or pain internally, and little to no bladder or bowel irritation. The only negative side effects I've noticed are constipation from the anesthesia and pain medications. It is truly a night-and-day difference from how I felt during external radiation and chemo treatments. I'm getting my appetite back, I've started to regain my energy and stamina, and I feel less and less fatigued with each passing day.
What was most difficult for me: One of the most difficult parts of this entire process was learning to trust my doctors and stopping myself from Googling every little thing related to cervical cancer. I learned that not every woman's experience with this diagnosis will be the same, and that no one's treatment plan is the same. In the beginning of this journey, I thought I could somehow research my way into being an expert on my personal case, but I quickly learned that a few Google searches can't replace an oncologist's decades of experience and success treating real patients.
The other really difficult thing was coping with how bad I felt physically and emotionally during radiation and chemotherapy. I was so tired that I slept nearly all day every day. I'd only bounce back on the weekends, and even then I'd be so upset to go back to Cleveland Clinic each week that I'd cry the entire car ride to Ohio on Sundays. I lost my appetite and couldn't eat anything but macaroni and cheese, cinnamon rice Chex cereal, and eggs. Bacon, egg and gouda breakfast sandwiches from Starbucks were literally a godsend, and one of the only things I could stomach during treatment. I lost about 10 pounds in the first two weeks of treatment, and about 20 pounds total throughout the full course of treatment. I'm still working to get my appetite back, and it's slowly improving. The bigger improvement has been in my mood and my emotions. Once I started to feel better physically, it did wonders for my mental health.
What I did to help myself: During treatment my boyfriend and I were four hours apart for five days each week, which made things difficult on both of us, emotionally. So we made an effort to talk at least once a day, whether it was over the phone, on a video call or via text. We'd play Words with Friends at night while chatting about our days, or we'd play other games together on our computers to pass time when neither of us could sleep.
During chemotherapy I'd bring my New York Times medium-level crossword book to keep my mind sharp and my brain occupied. I'd also use time during the day to journal about how I was feeling or what I was thinking about.
When I was feeling confused or down, I'd find a lot of support from the women in the Cervivor Facebook group, which was a tremendously important resource for me as I went through treatment. The women there are so strong and willing to share their experiences with one another. It truly is a special group that helped me through a lot of very difficult and uncertain moments.
Lastly, I tried my best to savor every moment I had at home with my boyfriend and my cats on weekends at home in Indiana. I'd curl up in bed and watch movies with the cats in my lap. I'd have some of my favorite foods that I couldn't have in Cleveland. And my boyfriend and I would cook and clean together like normal folks do, to bring a little bit of normalcy back to our routines each week. It was really nice to have time at home during treatment.
Where I am today: Today, I'm one brachytherapy session away from being done with my planned course of treatment. My doctors are saying that my tumor is still shrinking, and they are confident I should be cured after brachytherapy without needing additional procedures. I'm excited to be so close to the end of treatment. I'm excited to ring the bell on Tuesday, and to spend time at home for the foreseeable future. It's also going to be nice to see my friends and family again. My boyfriend and I have talked about having a small get-together to celebrate the end of treatment, so I'm also excited for that. But most of all, I'm looking forward to living "normal" life again.
What I want other women to know: I want other women to know that if you are concerned about anything regarding your reproductive health - whether you're still menstruating, going through peri-menopause, in menopause, or post-menopausal - please go to your gynecologist and demand a pap screening. I also want more women to know that having HPV is not something to be ashamed of. It is, however, something to keep an eye on and can be a risk factor for cervical cancer. So I want to urge other women with HPV (even if it's a low-risk strain) to get annual screenings anyway. It's so important to take care of yourself, and to speak up if you know something isn't right.
How I will try to help others: Now that I've been through treatment, it's almost guaranteed that I won't menstruate anymore. Because I've always had very unpredictable periods, I now have too many period products in far too many sizes and shapes to let them go to waste. So I plan to put these products to good use by creating "menstrual care packages" for women in need, and donating those care packages to a local women's shelter(s). I also plan to insert some information on free or low-cost women's healthcare locations in each care package, so women know where to go for pap tests, birth control, pregnancy resources or other needs.
In addition to the care packages, I really want to get involved with Cervivor or another organization more local to my area, to spread awareness around HPV and vaccination, cervical cancer screenings and women's health. I feel it's so important to be a voice for other women who may not have access to information or healthcare that can help prevent cervical cancer or detect it earlier.