Lily

Location: Minnesota

Cancerversary: October 2016

Age at diagnosis: 27

Diagnosis: Squamous cell carcinoma

Stage of cancer: IB2

Cervivor School Graduation: 2019

How my story begins: About a year into my relationship with my boyfriend, I noticed that I was having quite a bit of pain in my pelvis. I would wake up almost every day in pain, not so much that I couldn't get out of bed. But just enough to make me realize that the pain was there. I would get up and take an aspirin and usually forget about it by the end of the day. I also started to bleed after sex. I convinced myself that it wasn’t that much blood so it must not be that big of a deal. I waited almost an entire year before going to the doctor. I was that person that would go to the doctor only when it was really bad. I kept putting off my regularly scheduled Pap smear because as a young woman in her 20s, I did not think I NEEDED to go to that one appointment. I thought I could likely skip one and be just fine. I don’t know what I was thinking!

I finally went into the doctor just thinking they'll do a quick check and I'll be out in no time. I even called my boyfriend to let him know I'd likely be home in about an hour. During the exam I remember thinking, "this is taking longer than usual." Then my doctor said, "Well, I'm sorry this is taking so long, but I'm seeing something here that isn't right." I thought to myself, "oh, probably just a bad infection. Okay, what do we need to do for this one?" I realized the severity of my situation when she made a call to a specialist and demanded that I be seen that day. I kept thinking: "Why hadn't I just gone in sooner? Why hadn't I taken care of myself properly? What have I done?"

I think I was in a state of shock because I called my boyfriend and when I reiterated the story, he dropped everything and told me he would meet me at the specialist. I went in, got examined again, now just silent, thinking the worst. I remember this specialist had HORRIBLE bedside manner. He was cold and seemed upset that he had to squeeze me in as the last patient of the day. He told me he needed to take a sample and it was some of the worst pain. I think a lot had to do with the fact that I was already so scared. The nurse held my hand and I just remember crying and crying.

When it was over, he told me since it was a Friday I would not have any answer until Monday at the earliest, and then he left the room. I got dressed, walked out to the waiting room where my boyfriend was waiting, walked down the stairs to the main floor of the hospital and just started sobbing. I couldn't breathe I was crying so hard. I think we sat there for about 45 minutes until I could gather myself and walk to the car.

The worst part was that my parents were on vacation in Mexico and weren't planning to be back for a week. I had to tell them on the phone while they were hundreds of miles away. We all just cried. I'm sure you can guess how much of a rollercoaster that weekend was for me. I went through sobbing fits, then I just wouldn't talk for hours, then I'd convince myself that there is no way this could happen to me. This couldn't happen to a girl who eats fairly healthy, has never broken a bone or even had a cavity. I had even gotten one HPV vaccine shot when I was 16, but it turns out I may have already had HPV when I got it. (You're supposed to get more than one shot for the vaccine to work the best, but that was not made available to me at the time.)

Monday came and I got the call. I was sitting against the wall in my dining room. I heard the, "I regret to inform you that the test came back positive. There is a tumor in your cervix and it is cancerous." He proceeded to explain more to me, but I just put the phone down and gave it to my boyfriend. I heard nothing. I saw nothing. I just stood there in shock.

Life before my diagnosis: When I say that I was the most normal 27-year-old, I truly mean that I was the most normal 27-year-old. I had met the love of my life, recently moved in with a friend, and started working with my father to help out with the family business full time. I had a beautiful dog, Rocco, who I adored. He went with me everywhere. I loved going to all sorts of different music concerts, walking around the dog park, and just hanging out with friends. I would even joke to myself that I was one of the most painfully normal girls that I had ever known.

How I felt after diagnosis: I don't remember much of the day I was diagnosed. I like to compare that event with having a bomb go off right next to you. Now, I haven't actually heard a bomb go off, but from that I can tell from the movies, it seems pretty similar to me. Something explodes in your ear (in my case, because they told me over the phone), everything goes white for a second, then black. I can't see anything in front of my face, I feel like I'm having almost an out of body experience and all I can hear is this annoying high pitched ringing in my head, I can't make out anything my boyfriend said to me and I just had to sit and take in this information. Information that I had never heard before, never experienced before. It took a little bit for my brain to process the information. I was pretty dazed for the rest of that day.

Telling my family and friends: When I was first diagnosed, my parents happened to be taking a trip to Mexico. My mother was out of the country and she was the person I needed the most. My parents ended up flying back shortly after I notified them. After telling my family and some close friends, I decided that - since I would likely be sick for quite some time - I should announce to my social media world that I was sick. The responses were overwhelmingly nice for the most part. I will honestly say that there were a couple of whispers floating around about my diagnosis. Questions about how many people I could have slept with or what I might have done for this to happen to me.

My treatment: I went through 5 weekly chemotherapy sessions, daily radiation, 5 internal radiation treatments (requiring surgical placement) and an additional 12 weeks of chemotherapy because, why not? That additional 12 weeks of chemotherapy was part experimental. It made me lose all of my hair.

How I felt after treatment: I was weak. I was sad. I went into a huge depression. I was throwing up all the time. I wasn't eating much. I could barely get out of bed for days on end. I would just sit and cry. I was so sick of being sick. I was sick of not laughing. Laughing can usually pull me out of any depression or negative mood. It broke my heart that nothing was funny to me anymore. I thought the darkest things almost every day, but I was lucky to have my family, especially my mother, who cared for me while I was sick and pulled me out of those negative useless thoughts.

What was most difficult for me: The most difficult thing for me was not laughing. It was crying every single day - not something I normally do. It's not something anyone wants to do. To take out laughter, something that brings SO much joy into my life and replace it with this terrible crying to the point where I couldn't breathe. That took quite a bit out of me. Also, not being able to eat, as I love food almost as much as laughing. Before cancer, I used food as a reward. So to reward myself with peanut butter toast or plain spaghetti just broke my heart as well. Not knowing if I was going to be okay was also very difficult for me, and not having all the facts all the time. Also, having all of this down time because of my sickness, my mind liked to wander and not in a good way.

I had to choose at the time of my diagnosis if I wanted to preserve my eggs or not. At the age of 27, I had NO idea if that was important to me and I didn't take the time to really think about the important decision I was asked to make. Now that I'm not able, it makes me pretty upset.

What I did to help myself: What I liked to do to help myself was decorate my house with pictures of vacations I had taken or experiences I had enjoyed. For some reason, I didn't have a ton of pictures in my house even though I was always taking photos. So I created two photo walls in my house where I made a gallery with framed pictures so that I wouldn't have to just sit and stare at a TV or a blank wall. I was also given lorezapam. It was such a huge help and I cannot stress that enough as well. I feel like sometimes there is a stigma with pills like that, but for me, after 4 days of crying uncontrollably, a lorezapam helped calm my nerves.

I also went on to social media to find others in my same situation. I happened to stumble across two women who I talked to while I was sick. That helped a lot as well. Seeing on their social media feeds that they were going through what I was going through helped me to feel like someone else had my back.

My life after cancer: My life after cancer is wonderful, crazy, stressful and beautiful. I make every moment count as much as I can. I did spend quite a bit of money after cancer. I kept thinking, "you never know what's going to happen, I should just buy these shoes." I am now pretty broke, so just like to put a little reminder that this was not responsible. Ha! Ha!

I am so grateful that I am here today, but I am definitely still going through some things. If I feel like I'm starting to get sick, I freak out and over-work myself to make sure that I am NOT in a position of sickness again. I feel like I have to say yes to every event or invitation. I feel like I have to be this perfect daughter for my mother since she took care of me.

I overly took care of my boyfriend while I was sick because I felt so guilty that he had to go through this (enter rolling eyes emoji!). Now we have this weird dynamic where he thinks I should still be doing everything because that is what I had been doing before (we're going to therapy about this). I also can't have sex. I don't like to be touched under my waist, even a leg hold makes me uncomfortable. Something that was so normal to me before my diagnosis now, gives me extreme anxiety. Not fun. I also just get tired so fast. I get made fun of quite a bit for that, but I just drink coffee and push on.

Where I am today: Today I am stronger than I have ever been. I am the healthiest I have ever been and at least for today, I am the happiest I have been with myself in a very long time.

What I want other women to know: I want other women to know that they are not alone. Even though it can feel like it, if you just dig a bit into social media, you will find others out there that are going through something similar if not the same as you. You are also not a bad person for getting this type of cancer. You are also not "lucky" you got this type of cancer, this type of cancer sucks and I'm so sorry you're going through this.

Also, if you have anything that is out of the ordinary, go get checked right away! Don't convince yourself that you'll be fine later or that you don't have enough time for something silly like a little blood after sex. It's important that you stand up for yourself and your body!

How I will try to help others: I am going to try and help others by sharing my story and by finding creative ways to get others out here in Minnesota to help spread the word about cervical cancer. I am going to wear my Cervivor ambassador bracelet and t-shirt with pride and give any information that is asked of me about cervical cancer. I love being there to help other women and parents, because I don't want any other woman to have to go through this.