How my story begins: I honestly thought I was going through menopause; I had just turned 51. I was experiencing lightheadedness, sleeplessness and an irregular cycle. My cycle had always been like clockwork, but over 2021 would only occur every two months or so. Then in early 2022 I had two extremely heavy cycles within a month of each other. (In hindsight I should have headed to the ER with the amount of blood lost but didn't.) I went to my PCP for my scheduled PAP and was told to schedule a colposcopy ASAP with my gynecologist. May 18, 2022 was my colposcopy and at that appointment we had trouble staunching the blood flow from the procedure and although my doctor wouldn't say so it was clear he suspected cancer. We received test results and I was referred to and met with oncology within 2 weeks.
Life before my diagnosis: I live in small town with my husband, 13 year old son and our dog Ethel Mertz, who was adopted during Covid. I worked in a small boutique handling sales, store displays and social media. Life was pretty low key but it allowed me to spend most of my energy being the caretaker for my family and home, and pursue some hobbies on the side.
How I felt after diagnosis: My husband attended my initial oncology consult with me. Staged at 1b3 the prognosis seemed very positive and treatment fairly straightforward. My particular doctor is not a fan of performing a hysterectomy so we were pursuing chemo & radiation. I think I was still in shock from the diagnosis and the journey I was about to embark on. I had to call my nurse navigator after the appointment to clarify information that had been given to us and ask some additional questions! Two weeks later I had a PET scan for radiation staging and discovered that I was actually Stage 4b.
Telling my family and friends: We of course called immediately family and close friends to let them know what was about to happen. But because I live in a small town it would soon be obvious that I was not working or appearing on social media. I decided that I would build a private Facebook page where I could post updates of my cancer journey. I named it "What A Beautiful Mess" after a favorite song of mine and the introductory newsletter was posted on June 13, 2022. My page was initially a place to simply inform, but it became my own amazing support network! It allowed me to puzzle through treatment, symptoms, emotions in the form of newsletters, which has been so therapeutic for me!
My treatment: After restaging we decided to continue with our initial course of treatment, minus brachy therapy - cisplatin and external radiation. I experienced many side effects and did not complete 2 of my 6 Cisplatin infusions, but scans showed that the cancer had stabilized. It was determined I would be a good candidate for immunotherapy based on the CheckMate 358 trial. I started on Opdivo+Yervoy (nivolumab+ipilimumab) in September 2023. I also did not finish 2 out of 4 infusions because I developed eye issues; a rare side effect. I had double vision from October 2022 to December 2023.
How I felt after treatment: I've been hesitant to write my story as I felt like I was still in treatment due to my eye issues! I will say I was overjoyed to ring that bell after my last radiation treatment - I had a difficult time getting my water intake correct! I was also not prepared for how long it would take for me to bounce back from the fatigue and digestive issues caused by treatment; it's a new normal that can change every other day!
What was most difficult for me: As I mentioned, having my support network was huge in maintaining my positive attitude. I am also a hugger but once my immune system became compromised I knew I had to isolate from society. We had scheduled a family vacation before my diagnosis and in an effort to keep some normalcy for my son, I sent him and my husband on the trip without me. I figured I could manage a week without them. However, they contracted Covid while on vacation and one week by myself turned into three. No physical contact for that long was really tough, phone/video conversations were not enough to make up for that. That was definitely my most difficult time during treatment.
What I did to help myself: I did my absolute best to stay positive; I knew this was key to my process and recovery. Believe me there were moments when I felt so defeated, but I learned to give myself a little time to feel those feelings and then move on. I tell people that you should treat positivity like a muscle, train it and strengthen it. Then you can acknowledge your low points as quick trips, not stay cations, and move ahead with your positive self! Trying consciously to live in the now was a large part of that too; not dwelling on if onlys and what ifs, but being very present and finding joy in all things!
My life after cancer: The biggest takeaway is that I try and live everyday to its fullest. I told people during treatment that I was living with cancer not dying from it. Some days I am more successful than others, there are still some health issues that slow me down. But I am definitely doing my best to foster hope and joy in myself and to spread it everywhere I go. I am living my dash and leaving a legacy of love!
Where I am today: As of today (4/1/24), my vision is back to normal and I am NED! Regarding cancer, I am not currently on any maintenance immunotherapy (Keytruda, Avastin, etc). My cancer team is concerned that immunotherapy may cause further eye and possibly other issues (the majority of the immunotherapy choices are all part of the same drug family). My next scan will be in August 2023 to see if I am still NED.
What I want other women to know: If you do not have a support network find one or build one. This is not a journey you have to make on your own.
And speak up and out! I found I often had to advocate for myself whether it was pushing the treatment schedule or getting answers to questions. You can do it! You have to! My journey with cancer started with me but became about everyone else. The more I fought for myself, the more I realized I was fighting for everyone and that only made/makes me, and all of us, stronger!
How I will try to help others: I read a quote by Rainn Wilson, he said, "I realized that fostering hope and joy in others is maybe our highest spiritual calling." I think I started believing that while I was active in treatment. I developed my own outreach program sharing bracelets with cancer patients and staff letting them know they were not alone in their fight. To date I have given out over 150 bracelets, with plans for approximately thirty more this summer.
I have also learned the power of sharing my story and in doing so have encouraged many to further educate themselves regarding HPV and cervical cancer. I continue to host my Facebook page sharing information from Cervivor.org, American Cancer Society, etc.; writing newsletters that talk about living with positivity and life after cancer and posting inspirational videos on TikTok.