How my story begins: My life before my diagnosis was pretty straightforward. I had accomplished a lot of the things I set out to do when I was a younger. I lived in/near a big city; I had a masters degree, a great job, a great relationship, a great group of friends and family. Everything was "great." Unfortunately, I didn't see at the time how great it was. I was constantly searching for the missing piece I felt I NEEDED to be happy, to have my life feel extraordinary in some way. While I would never say that cancer has been good for me, it has allowed me to slow down and really appreciate who I am, where I am, and all of the people I get to be there with.
My Cervivor story begins the night before Thanksgiving 2016. I had a wonderful night with my husband, including a romantic turkey day dinner for two, a roaring fire, and concluding the evening the way romantic partners sometimes do. The evening was a dream, but the next morning, I woke up to the beginning of a long nightmare. There was blood all over our sheets. I hadn’t experienced that before so I chalked it up to my IUD, resolved to make an appointment with my gyno, and moved on to celebrate Thanksgiving with my family.
A few weeks later, I went to see my gynecologist. This wasn’t an easy feat for me. I had been doctor-adverse due to my anxiety issues for a few years, avoiding everything from my gynecologist to the dentist. When I went to see her, she reprimanded me saying that there was a lot of blood and why did I come when I was on my period? I told her that I wasn’t. She said she would try to do the pap and HPV test, and sent me on my way. She gave me no cause for alarm and I again chalked it up to my IUD and made an appointment to have it removed.
A few weeks passed and I got distracted with the Christmas season. On Christmas Eve, I was gathered with my family: parents, in-laws, siblings. All of a sudden, I began hemorrhaging. Blood was rushing out of my vagina and all over the floor. Luckily, I was alone but I was embarrassed and I didn’t want to ruin the holiday. So I cleaned myself up and moved on. The next day, Christmas, everything was fine. The day after Christmas, I woke up to find blood soaked through my sheets to the mattress. My husband I went to the emergency room. I was there for hours before I was seen. I had an ultrasound and an exam and was told they couldn’t find anything and couldn’t see my IUD. They told me I had some sort of condition called “extra uterine bleeding” and prescribed hormonal birth control pills.
I went to my usual gyno for a follow up and she asked me whether I had received my test results. There were trace amounts of HPV and she wanted me to go for a colposcopy. I scheduled the colposcopy but was told I had to get my IUD out first to stem the bleeding. I went to two separate appointments where they were unable to remove my IUD. I believed at my third appointment they would put me under and use a camera to remove it. At that third appointment, the same thing happened. They had scheduled it wrong and weren’t planning to do surgery. I broke down into tears. I was so frustrated and just wanted to know what was wrong with me. Luckily, the gynecological surgeon promised to fit me in that day. I waited in the OR prep room for six hours before they were able to take me into surgery.
When I woke up, the first face I saw was my husband's. I asked him if they had been able to remove the IUD and he said no. I immediately knew something more serious was wrong with me. The surgeon had found a large tumor in my cervix and did a biopsy. She said it was very likely cancerous and called an oncologist back that night to run tests. She asked my husband not to tell me until she was in the room, but he broke down when I asked him with tears in my eyes. “They found a tumor, she thinks it’s cancerous.” I was also anemic from hemorrhaging so much blood, so they kept me in the hospital that night for my first of many blood transfusions.
How I felt after diagnosis: The next few weeks were a blur of tests, scans, doctors, and diagnosis. Ultimately, I was told that I had a large tumor in my cervix and the cancer cells had spread to lymph nodes near my abdomen and to one in my neck: it was stage 4. That’s the worst stage for those of you keeping track at home. I dealt with the news the way most rational people would - I got rip roaring drunk on straight vodka. I spent the rest of that weekend either sleeping or getting high off pain pills (prescribed to me for the intense pain the tumor was causing in my back, thank you very much) and alcohol. My parents came to visit and I can’t imagine what seeing me in that state did to them.
That Monday, I woke up, head aching, eyes blurry. I had already taken a leave of absence from work and didn’t have anything on the agenda for that day. I remember my first thought being to go back to sleep, sleep all day, who cares anymore? But the sun was shining and it was unseasonably warm for early March and we had no food in the house. So I asked my husband if we could go grocery shopping and out to lunch. And we did. And I don’t know how or why. But from that day forward, I was resolved to weather this in a way that would make myself and my loved ones proud.
Telling my family and friends: I wasn't the one to tell my family and friends. It was too hard for me. My amazing husband was able to do that for me. After all, he's the one that had to tell ME. After my parents and my best friends found out from him, they would call or text me and it was easier to respond then having to say to them directly, "I have cancer." Honestly, laying in the hospital that night, I couldn't imagine breaking their hearts the way mine was broken. The only person I told directly was my best friend from childhood. I barely remember what I said. I mostly just remember the blur of my surroundings in the hospital and the ringing in my ears. I've gotten more adept at delivering news now. I'm still going through treatment and my scans have yet to come out clear, but now I'm able to see the positives about where I'm at and how far I've come and the options still available to me. I can be more of a support to them and it doesn't feel like I'm hurting them.
My treatment: I started a combination of chemotherapy and radiation in mid-March 2017. I wasn’t working and radiation only took about an hour a day, so needless to say, I had a lot of time on my hands. I also decided that I would shower and get dressed every morning before radiation as if I was going to work. Just because I was sick didn’t mean I had to look sick. Fashion and clothing has always been a passion of mine and that’s how I started posting on Instagram every day of my radiation treatment with #chemocouture. I wanted to keep my loved ones posted on my progress and it gave me an extra reason to get out of my pajamas. I had no idea what an amazing community of fellow cervivors I would find. Women who, like me, didn’t feel the need to give up their life, their fun, their sense of humor, their desire to look and feel good, just because they had cancer. Women who weren’t afraid to talk about the scary stuff, the scans, the dilators, the times when results don’t come back how you hoped they would. Women that give me strength every day to put on a smile and a cute outfit and go out there and LIVE.
After my first round of radiation and chemo, I started 4 additional rounds of chemotherapy. This was the bad stuff, the 'make your hair fall out' stuff. The thing I was scared of most. I felt like losing my hair would officially make me look sick, unattractive, and take away my femininity. And you know what? It kinda did. It sucked. But head wraps and wigs helped me cope and my husband never looked at me different even one time. Soon enough, I finished chemo and my hair started growing back. Now I get to rock a blonde pixie that I NEVER would have the guts for in the past. I wish I could say that my treatment ends there. Unfortunately, I'm still going through it.
What was most difficult for me: Besides telling my family and friends, the thing that was most difficult for me was learning to slow down and truly start taking care of myself. I don't have children and I'm able to pretty much go wherever and do whatever I want. So I can't say that I had to learn to put myself first, because that's honestly never been an issue. I did, however, have to learn to say no to things, to let people help me, to not be the busiest and most adventurous. I also had to learn to place a much higher value on rest, quiet, and stability.
What I did to help myself: To help myself during the first months of diagnosis and treatment, I decided to start posting everyday on Instagram about what was going on with me. Instagram provided me four major benefits:
1. It gave me a reason to get up and put on real clothes everyday. I hashtagged with chemocouture and talked about my outfits and how what I was wearing represented how I felt that day or a message I wanted to send.
2. It let me indulge in being a little narcissistic and talking about myself. For once, I felt I had something to share that could truly help others.
3. It allowed to me give updates to my family and friends all at once instead of having to reply on countless texts and phone calls. Treatment is hard enough without having to rehash over and over everyday.
4. I was able to meet amazing women who were going through the same fight that I was and really helped me feel like I wasn't alone.
My life after cancer: I'll let you know when that happens but I can honestly say that life DURING cancer has offered me a lot of opportunities and a lot of new perspectives that I really needed.
Where I am today: Today, I'm still going through treatment. I'm hoping to start a clinical trial soon and my doctors are developing new treatment plans for me. Even thought I'm not yet cancer free, I also don't let cancer define me. I still go to work everyday, go out with my husband and friends, make plans for the future, and try to enjoy my life to the fullest possible extent.
What I want other women to know: I want women that are diagnosed with cervical cancer (or cancer of any kind) especially at such a young age to know that their life isn't over. You can still be yourself, you can still care about everything you used to care about no matter how trivial. I want women battling cancer to know that they are allowed to have a sense of humor about it and maintain your ambitions. Cancer doesn't have to define who you are.
How I will try to help others: I see my role in helping others in three parts:
1. Raising awareness about cervical cancer. I think it's important to attach real people and real faces to this disease so that people know it CAN happen and DOES happen to people just like them or their loved ones.
2. Advocating for the things we need to END cervical cancer like screenings and vaccination and also helping to empower women to take charge of their health, know the right questions to ask, and demand treatment.
3. Showing women that are diagnosed with cervical cancer (or cancer of any kind), especially at a young age, that their life isn't over. You can still be yourself, you can still care about everything you used to care about no matter how trivial. I want women battling cancer to know that they are allowed to have a sense of humor about it and maintain your ambitions.