How my story begins: I'd been married for almost 2 years. My husband and I lived in an apartment in Minneapolis overlooking the Mississippi River. Aside from normal work stress, we were relatively carefree. We loved going out to restaurants, watching movies, playing music, spending time together and with our dog, Louis. We both worked full time and I had a freelance graphic design business as well
I decided to get a Pap test in the summer of 2017. It had only been around 2 years since my previous one. My doctor called me a few days later and told me that I tested positive for high-risk HPV types. I had no symptoms. She wanted me to undergo a colposcopy. I've always been terrified of medical things. I don't handle needles or blood draws well at all. So the possibility of a biopsy of something as sensitive as my cervix had me drowning in anxiety and panic attacks for the weeks leading up to it. I got through it, and my doctor said that it was confirmed to be CIN 1, so protocol would be to wait it out a year and see if my body's immune system could fight off the HPV.
In the summer of 2018, I went back for another pap. This time, CIN 3 was found. I had another panic-attack filled couple of weeks leading into another colposcopy where 5 biopsies were taken. Afterwards, my doctor suggested I have a LEEP (essentially a cube removed from my cervix). My husband and I hadn't had kids yet and I knew this could impact my ability to carry a child to term. It was an agonizing decision. And as it turns out, it's an agonizing procedure that I wasn't given any pain medication for. But I had it done and the next day, the doctor called, told me to sit down, and said that they'd found Adenocarcinoma in situ in my cervix. And although it's essentially Stage 0 cancer, it's so unpredictable in how the cells scatter and spread. So they recommended a hysterectomy within a year to prevent advancement. I was crushed and sobbed the minute I ended the call. It's a moment I'll never forget.
How I felt after diagnosis: I was in shock. I felt like my entire brain shut down. I couldn't formulate thoughts. I would forget what I was doing all the time. My motivation to live my life was at 0%. I couldn't care about anything besides the fact that I had cancer, that we weren't going to be able to have kids, and that I was going to have a major surgery that I was afraid would financially tank us. I was worried about how it would affect every part of our life together.
I was sad. I was angry. I felt responsible for my husband and I being given the sentence that we wouldn't be able to have biological children (even though I fully understood I didn't do anything to cause this HPV/cervical cancer...I was still mad at my body for doing what it did with those cells.) I was overwhelmed and every day felt like absolute drudgery. My heart broke all the time.
Telling my family and friends: This was maybe the hardest part. We called our parents and had each of them get on the phone together so we'd only have to tell the news once. Of course, there was crying. There was research done and shared. My dad's response was, "That's a heavy hit." This so perfectly described how I felt that I decided to use that phrasing when I told other people the news. It felt like we'd been hit with a wrecking ball.
The hardest call I made was to my best friend. We lost our friend Christie to a rare form of brain cancer at 27 years old in 2013, and to have to say that I too had cancer now was the most unbelievable and difficult thing to say to her. I had somehow naively thought that since someone close to me had already had cancer, that it wouldn't happen to me or anyone else I was close to. It was all like a really bad dream.
I was inundated with texts, emails and phone calls from family members offering to help and asking what we needed. We had no idea what we needed. And it was overwhelming and humbling to have all this kindness coming at us, but I always felt like I wasn't staying on top of thanking people or responding to messages fast enough. I had no idea that fielding correspondence, calling insurance, the doctor, the oncologist, the lab, HR, work -- how all of that becomes like a part-time job once you're diagnosed. It was a lot to handle, but family and friends were more than helpful, loving and supportive.
My treatment: On March 7, 2019, I had a radical hysterectomy. I was able to keep my ovaries because of my young age. It was my first time under anesthesia. I had never been more terrified and simultaneously emotionally wrecked all at once in my entire life. I was released on the same day, although I could barely keep my eyes open and had no desire to leave the hospital at all. My husband got me home, helped me up the 16 stairs to our apartment, and I went directly to bed. I was in a lot of pain that night and over the next several weeks, but of course, medication helped. We had a meal train that our friend set up for us, so food appeared on our doorstep every evening. I didn't eat anything other than crackers and applesauce for the first 2 days, but I was very grateful for a tasty turkey burger on that 3rd day. On the 4th day post-op, I decided to call my doctor at 3pm to see if any results had come in. It was then that she told me I was cancer free, and no further treatment (chemo or radiation) would be necessary.
How I felt after treatment: My mom was with me when I got the news. She burst into tears of happiness. I cried a little, but I immediately wondered if I'd made the right call. I wondered if I had waited to have the surgery a bit longer, if maybe we would've been able to get pregnant? I know I would've had a high-risk pregnancy that needed constant monitoring, and I would've still needed the hysterectomy 6 weeks after I delivered a baby. But I still felt terrible that my husband and I would never have the experience of having a biological child and I had wanted to do whatever I could to still help us do that, if I could. Luckily, later that night my husband assured me that I made the right decision and he was overjoyed that we no longer had the black cloud of cancer hanging over our heads. But who wants to make a decision between their own life and having biological kids? I learned through it all that cancer patients are forced to make incredibly ridiculous and unfair decisions about their life and their bodies. It can really mess with you!
What was most difficult for me: The anxiety and depression. Just to pick myself up every single day and go to work like everything was fine, felt impossible and unfair. I wanted the world to stop. Every little issue or concern that arose around me felt incredibly minor to me, so I got irritable when I was asked to expend energy on things at work or at home. I was on medication for anxiety and depression before I was diagnosed, but it didn't help much in those first few months. My anxiety was off the charts as I approached colposcopy and LEEP appointments, and each phone call about lab results ended with me feeling scared and depressed. It was really hard for me to stay off of Google at night, as well. I like to be well informed because it often helps my anxiety to know what to expect. Unfortunately, there isn't a part of any of this that's not scary. So the more I learned, the worse I felt.
What I did to help myself: I started seeing my counselor weekly. I had seen her in years prior and decided to reconnect and go on a regular cadence. We worked on past trauma from prior medical experiences and helped prepare me for surgery. We also talked through coping mechanisms for depression, reframing harmful thought patterns, and how to care for myself mentally and spiritually. I went back to my doctor and we adjusted my medication for anxiety and depression. I also leaned into my Christian faith. I returned to the Bible verses that had helped me through scary things in the past and they took on new meaning through this experience. I read books about fear and anxiety. I made the decision early-on to be open with my coworkers about what was happening, even though it was a highly personal thing. Who wants to tell your coworkers you have cancer in your reproductive organs? It's kind of embarrassing...but it was just easier to not have to pretend that I was alright. I also kept a document open on my computer where I could go and type out my feelings whenever I felt overwhelmed or paralyzed by my emotions during the day or in the middle of the night, if they kept me up. The writing was really helpful.
My life after cancer: It's a really weird thing to be told you're cancer free. Suddenly the storm that has raged for so long is just...over? It had taken a few months for me to start even trying to wrap my mind around what I've gone through and what I've lost. It's just becoming real, honestly.
Where I am today: I'll go back to my oncologist for follow-up check-ins. I am nervous about those visits but not nearly as nervous as I was before my biopsies and surgery. I'll always hold a fear of recurrence or worry that they missed a cell somehow, but I try hard not to focus on that. I'm doing my best to sort through my feelings and write about my experience often. My husband and I have since moved into a house and are beginning a happy new chapter without cancer. I face landmines each day that I'm learning to deal with -- things like ignorant people asking when my husband and I will hurry up and have kids, telling us "you still have time," somehow getting added to mailing lists for baby products, or just accidentally walking through the baby department at Target. It can all trigger pain for me. It's been 4 months since my surgery and I'm still adjusting to hormonal and physical changes in my body. But considering where I've been, I'm doing very well.
What I want other women to know: GET. YOUR. ANNUAL. EXAM. Do not put it off! I know it's scary, but stay on top of it. Don't postpone a colposcopy. Ask your doctor lots of questions. Advocate for yourself and demand the vaccine if you're within the age bracket. Also...no matter what happens, you're stronger than you realize and there's more love around you than you can see right in front of you.
How I will try to help others: I will never stop talking openly about what I've gone through. After I opened up about my diagnosis on Facebook and Instagram, it was unbelievable to me how many women reached out to me to tell me that they had also gone through colposcopies, LEEPs and scares with HPV. I felt so alone through that time and I want everyone to realize how NORMAL it all is. I'll also never stop advocating for the HPV vaccine. I refused it when I was 19 because I was newly in charge of my medical decisions and as I mentioned before, I don't like needles. My doctor also didn't tell me it was a cancer vaccine.
I love to talk about the need to reframe the HPV vaccine as a *cancer* vaccine, not a sex vaccine, and the need for boys to be vaccinated as well as girls. There's plenty of misinformation out there to squash and I love combatting it with reputable facts and knowledge.