How my story begins: My story starts a year before my actual diagnosis. I was experiencing frequent episodes of clear vaginal discharge when I would stand up, enough to wet my underwear. I went to my annual exam and mentioned this to the doctor who told me it was most likely my bladder and to do kegel exercises. I left confused but didn't think anything of it.
A year later at my next exam a "polyp" was visible, the doctor removed it and said 95% of the time these were nothing that I shouldn't worry. I week later I was told I had cancer, a rare and aggressive form of adenosquamous carcinoma.
Life before my diagnosis: Single working mom raising my daughter (and my dogs) while working as a sales manager on the road in Connecticut. Happy, healthy doing all the things you are supposed to do to make sure you stay that way.
How I felt after diagnosis: I was shocked. I wasn't expecting that at all. I am a very pragmatic person so I immediately got to work figuring out what was next. What do I do now, how do we fix this. My doctor referred me to Smilow Cancer at Yale, to a surgical oncologist who recommended a robotic, laparoscopic radical hysterectomy asap. Two weeks later I went through the surgery was told they got great margins, no node involvement and everything was good. I walked out of Smilow thinking I beat cancer!
Telling my family and friends: The first two people I called right after I left the Gynecologist with my diagnosis were my Mom and my boss. Both of them reacted with shock and concern. I chose not to tell my daughter at the time as I didn't want to unnecessarily worry her.
I simply explained to her that I had to have a medical procedure done and that I would be in the hospital overnight and not to worry, her uncle would be staying to take care of her. That plan turned out to not be the best plan. Three months after my surgery my cancer returned and I needed to start treatment and had to tell her what was going on.
My treatment: Initially the treatment was the hysterectomy. Three months after my cancer recurred in my vaginal cuff. After some back and forth with Yale I decided to go to MSKCC for a second opinion and ultimately ended up staying there for all further cancer care.
I had a debulking surgery and then radiation therapy (5x a week for 5 weeks) with Cisplatin (1x a week) and then brachytherapy once a week for 5 weeks). I was NED for about a year when I had my second recurrence in the same area. It was suggested that I think about a total pelvic exenteration to which I immediately said yes.
During pre-op testing for my TPE, metastasis was found on the surface between my liver and kidney (most likely from the laparoscopic surgery) and I was no longer a candidate for the TPE. I had a mediport placed and began chemo therapy (Taxol, Carboplatain and Avastin).
I cold capped in an effort to prevent hair loss (I was getting married later that year). Once I finished that treatment, my recurrence had gone away but my Mets remained. I was offered the chance to enter a clinical trial for a new drug called tisotumaub vendotin (now Tivdak)and I decided to do it. I experienced really bad side effects from the treatment, my dose was adjusted a few times and eventually I had to stop the trial. I then received stereotactic body radiation to my metastasis which ultimately took care of it.
A year later another metastasis popped up and again we opted for the stereotactic body radiation and then Keytruda for two years (which recently ended in May of this year).
So that combo got me back to NED which I have been for the last two years, my next scan will be in October 2025 and finger crossed I will still be NED!
How I felt after treatment: Tired. Very very tired, it has been a long 9 years. I had to leave my job in 2019 due to the side effects from my various treatments, the worst of which was peripheral neuropathy in my hands and feet. So that was difficult for me as I have always worked for as long as I can remember.
I had to adjust to my "new" body and how it worked or didn't work. But I was grateful too so grateful for MSK for always being there for everything, and my family for the support and for getting through it. I felt strong and proud of myself and my body (even though I was weak from all the treatments I felt strong).
What was most difficult for me: Most difficult for me I think was telling my daughter. She was 9 and I hadn't told her initially but had to when I had my first recurrence. She was so angry and scared and wanted me to promise her I would be ok and I wouldn't die and leave her. I said I couldn't promise that but I could promise I would do everything I could to fight this, to be here as long as I could.
Knowing how much she worries about me to this day is still the hardest part. She just turned 18 and my cancer has been a huge part of her young life which isn't fair to her. She is off to college and her biggest worry is leaving me. Definitely the MOST difficult part of these past nine years.
What I did to help myself: I have always lived by the motto to keep looking ahead, not behind. That has helped me with so much in my life. While we learn from the things in our past they are not changeable. They shape us and teach us lessons to move forward. I have always been pragmatic and said, "I just have to play the cards I have been dealt" and I honestly do feel that way. I have not been angry or said "why me".
I have absorbed all the information that I am able to, to be able to advocate for myself. It is SO important. Ask the questions, learn what is happening and what options there are. Education is so powerful. It helps give us the tools to advocate.
I have allowed myself to say no. Always a people pleaser in my pre cancer life, I have given myself permission to put myself first. If I don't feel like going to that family reunion, I just say no and move on. Don't feel like walking my dog today, that's ok we will walk a little extra tomorrow. I don't allow myself to feel guilty for taking care of me.
My life after cancer: Technically I haven't really had a life after cancer. With so many recurrences in my cancer story, I'm still pretty in touch with life with cancer.
When I was told that I had my last Keytruda treatment, I felt a bit lost. It was my routine, every 6 weeks go to NYC for treatment, every 12 weeks get a pet scan. Make sure my port is flushed, my blood work was done. So when that all just stopped it was a little jarring. And even though I like to keep looking forward, there is always a part of me waiting for the next shoe to drop, the next scan to come back with something concerning. I have learned that is common and it is ok to have that worry, I just don't allow it to take over my life.
I spend so much time being a mom and a wife and I am back to gardening and doing hobbies I enjoyed in the past. Taking care of things I love.
Where I am today: I am about to be an empty nester! Time has gone by so fast and my daughter is about to head to college. My husband is back to work in the office after years of working from home during and after COVID. I am happy, I feel healthy and eager to find something to do with my soon to be free time.
What I want other women to know: That they aren't alone. There are so many other people who have been through or are going through what they are. That HPV isn't a dirty thing and they shouldn't feel shame or embarrassment about it. And that their voice is one of the most powerful tools in their toolkit, so don't be afraid to use it.
How I will try to help others: I would love to help other women with their cancer journey in any way that seems best. I would love to get out there and advocate for the importance of the HPV vaccine, HPV testing and educating. Trying to help stop the shame that is often attached to an HPV diagnosis by helping to educate other women (and men) using the tools I have gathered over these past nine years.
I would love to be present for anyone who needs me. A chemo buddy, a person to talk to. To explain how important your voice is and how to be your own advocate. To help bring more awareness to cervical cancer as a whole and to make sure that research and developing new treatments continue to reach those who need them.
Any additional information you'd like to share: I have learned a few things over the years and I do still believe that looking at things with a glass half full mentality has really worked for me. I just try to live my life one day at a time and I try to count my blessings. If not for cancer I wouldn't have met my husband. I wouldn't have had these past nine years to be with my daughter everyday and not at work (although I do miss work) that time is so precious to me.