“I Am NOT My Diagnosis” by Lindsay Gullatte-Lee

How my story begins: In June, I started experiencing irregular bleeding, and I automatically became suspicious because my period had never been irregular. I've always had regular periods, every 28 days like clockwork, which is how I always knew when I was pregnant.

The first time it happened, it stopped a couple of days later, so I let it go. But in July, when it happened again, it was just after my period, after my husband and I were intimate. There was a lot of blood! By now, I'm in a panic. This definitely wasn't normal, so I went to the ER, and they told me there was no cause for concern.

Fast forward to the next few months, and I would just bleed randomly, to the point where I had to start wearing pads every day because I never knew when I was going to bleed. There were several clots, and some days I would sit on the toilet for up to 45 minutes because I was bleeding. It was definitely not normal. I went to my primary care physician and told her my symptoms, and she tested me for hyperthyroidism, which came back positive. After being referred to an endocrinologist, I was diagnosed with Graves’ disease and given meds.

I was describing my bleeding to the endocrinologist, who suggested I still go to my Gynecologist because she agreed the bleeding wasn't normal. I finally got in to see a Gynecologist, who was new to me, and after a Pap smear, I was told my cervix felt abnormal and enlarged and was sent for an ultrasound.

I looked at my chart online and saw the results of my Pap smear, and the first thing that caught my eye was a mass! I panicked, but I couldn't get in to see him again for two weeks. After a grueling two weeks, I'm in his office, and he walks in and blurts out, "It’s cervical cancer, and I'm referring you to the Levine Cancer Institute; they will take care of you." And walked out. No further explanation of my results...nothing.

How I felt after diagnosis: I was in a state of shock and disbelief. When you hear "cancer," you automatically think negatively. I was scared, confused, and angry because he didn't take the time to talk to me or explain anything.

Luckily, I got into the Cancer Institute rather quickly, the very next day, and my gynecologic oncologist, Dr. Casablanca, explained everything to me. She laid out a plan and told me it was treatable, and I felt better. Now it was time to work.

My treatment: My treatment plan was five weeks of external radiation, five weeks of chemo, and five rounds of brachytherapy.

What was most difficult for me: The most difficult part for me was being in the hospital. After my biopsy, my tumor was angry, and it kept bleeding, and I had to be admitted to the hospital. I stayed for two days, went home for three, and was back in the hospital, where I ended up staying for eight days. I had multiple blood transfusions because my iron kept dropping. I was still bleeding even though "packing" was administered. If you don’t know what “packing” is, be glad! It is the most uncomfortable thing to go through, and I had more packing done than any other patient according to my treatment team. "Packing" for those who don’t know is a procedure where they take a roll of gauze, put medicine on the end of it, and push it into your vagina until you can't take anymore to attempt to clot the bleeding.

I was in the hospital for a total of ten days - the longest I had ever been away from my kids and the longest I had ever been in a hospital. My arms were bruised from all the IVs, and I had to start radiation while I was in the hospital because I wouldn't stop bleeding. My diagnosis was confirmed on November 9, 2022, while I was in the hospital, and I spent my and my husband's birthdays in the hospital. I was scared, alone, and depressed. That was the worst experience for me.

What I did to help myself: I stayed positive. I spoke life into myself. I prayed. I leaned on my family a lot, and I leaned on my support system. I did research and started to educate myself. I stayed hopeful and never once thought I couldn’t beat this.

Where I am today: Today, my 9.8cm tumor shrunk to 3.2cm, after my external radiation treatments and chemo, and after the five rounds of brachytherapy, the tumor is gone! I have been declared NED as of April 2023.

What I want other women to know: What I want other women to know is that we are fierce beings! We are strong, and there is power in our voices, in our stories, and in our journeys. Listen to your bodies! Advocate for yourself and others! Speak up! Show up and Show Out! YOU ARE NOT YOUR DIAGNOSIS!

Lindsay’s full story can be found on the Cervivor website at: http://cervivor.org/stories/lindsay-g/

Lindsay Gullatte-Lee

Lindsay Gullatte-Lee

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