Zuli

Location: Iowa

Cancerversary: November 2023

Age at diagnosis: 47

Diagnosis: HPV

Stage of cancer: Not applicable

Cervivor School Graduation: 2024

How my story begins: In the first quarter of 2022, I suffered from several UTIs. I was getting a UTI every two weeks with a total of 6 UTIs in three months. I went to urgent care several times, till I realized I was having one every two weeks. I then scheduled an appointment with a Urologist, that was my first scare with the word cancer. They checked my bladder and were told I was free of cancer. I continued to get a UTI and went to my regular doctor, urologist, and gynecologist. My gynecologist checked me and said everything looked fine. I asked a ton of questions and everything was supposedly "OKAY".

I knew things weren't okay because I continued to get UTIs to the point the urgent care doctor raised his voice telling me I couldn't continue to go there. He said, "I needed to go to a specialist"! I lashed back and told him I had gone to a specialist, and they couldn't figure out what was going on both the urologist and gynecologist! I was not only dealing with UTIs but also with spotting, and inflammation in the pelvis.

I kept advocating by going to the doctors and questioning why I kept dealing with all this. I went back to my gynecologist and told them it wasn't normal. As the year went by, I kept dealing with issues. In 2023 I started getting a discharge and thought it was a yeast infection as I was notorious for getting those. I started bleeding in between my periods more often to the point it wasn't stopping. I once again went to my gynecologist. They finally offered in August 2023 a pelvic exam with an ultrasound machine to check me. I was told I had a polyp that most likely was not a big deal, but they wanted to go in and remove it. In September 2023 the polyp was removed and I never received a call from the results so I figured everything was okay. At the end of September, I had a family event and had to postpone my original follow-up appointment set for October.

The next appointment wasn't available till November 3, that day I was told that the polyp came back with cancer cells and I needed a full hysterectomy. I could not get the surgery set that day because they weren't available. They called me the following week to schedule my surgery for December 16. Then called me the next day to cancel as the doctor had talked to other doctors and they weren't comfortable with them doing the procedure and instead were referring me to the cancer specialist - an oncologist. I was confused not knowing why things were being changed drastically. On November 10, I saw the oncologist and was told I needed to have a full hysterectomy to make sure that it didn't spread out. The risk could spread to your bones and/or organs. On November 16 I had a full hysterectomy.

Life before my diagnosis: Dealing with infertility all my life and PCOS has been difficult. Having irregular periods, has been frustrating.

How I felt after diagnosis: I felt scared, drained and upset. I had been advocating for my body for over a year and every time I just heard everything was "okay". Now all of a sudden, they drop the scariest word I've heard "CANCER" I didn't know how to take it. I remember as I was being told I bit my lip to stop the tears from coming down my face. This was so I could focus on what was next.

I had the darkest three days of my whole life. I thought it was the end, I didn't know what to do or where to start. The word "cancer" alone is scary no matter what stage it may be in. I decided to put myself together and agreed to speak to a therapist. I thought I was strong and didn't need anyone; at least that's what I showed. But inside I was broken and couldn't piece myself together.

Telling my family and friends: I remember coming out of the gynecologist and texting my husband the results. He right away called me non-stop as I was blocking his calls. I couldn't take his calls at the moment as I didn't even know what had just happened. Not only was I given the diagnosis but was also remembered "Since you don't want to have kids, a full hysterectomy would be best"; mind you it wasn't that I didn't want to have kids but I couldn't have kids due to infertility. All this was playing with my mind. It was no longer my choice to move on from not being able to have kids. It was final, nothing I could do to have a child would be possible.

Then realizing I had to tell my father after the death of my sister in September was breaking me inside. I didn't want to hurt him. He was already going through a lot and now I was going to give him more bad news. I didn't know how or what to do. Originally when the surgery wasn't going to be till December, I thought perfect I have time. But when things changed for me on November 16, I didn't know where to start or how to even start. I couldn't put myself together; how was I going to help someone else to understand my process and diagnosis? I didn't have the answer.

My treatment: On November 16, I had a full hysterectomy. As soon as I woke up, I asked the doctor about the results. They said the doctor told me the results, but I didn't remember. The nurse said the doctor could not give me the official results, but it looked as if it had not spread. I would get a phone call.

I remember the following week I received a call from the nurse saying everything was good and nothing had spread out.

How I felt after treatment: I felt frustrated as I couldn't do anything without help but thank God for another opportunity to be healthy again and cancer-free.

What was most difficult for me: The most difficult part for me was when I was given my diagnosis. I believe that they should have a mental health provider available for you to talk and discuss and cry. I was lost after the appointment and sat in my car balling and not knowing what was next. Not wanting support from my family.

What I did to help myself: After three dark days, I pulled myself together and yelled at myself for having this take a toll on me. I am stronger than this and you need to switch this around. Instead of crying and not knowing what to do, call your friends in certain areas and start cervical cancer chats for Latina women who need to hear this and can advocate for themselves and their bodies, as well as understand the importance of getting checked and getting the HPV vaccine.

I have partnered with Polk County Health Department, Primary Health Care, and Patti Murillo-Casa, Cervivor Ambassador in New York City.

My life after cancer: Today I can say I feel free from pain. I no longer have inflammation, discharge, or discomfort. I feel great and the cervical cancer chats in Spanish are an amazing therapy for me. I invite others to attend and speak about it or do the same in their area. Helping others understand what I went through, and the importance of advocacy helps me heal inside.

Where I am today: Today I am cancer-free and healthy and that's what matters to me. I will be around for more years with my family, especially my father.

What I want other women to know: Please check yourselves and advocate for your body. Don't assume not receiving a call from the provider is always a good thing. Now I follow up with my providers. Because in my mind I thought no call was good as it was not bad news.

How I will try to help others: I will help others by partnering with the right people to help others understand the importance of advocating for themselves as well as getting checked. Helping others understand the importance of the HPV vaccine for children starting at age 9. All this is in Spanish and that's my ultimate goal to get the information for my Latinas out there.

Any additional information you'd like to share: We definitely need more help specially in Iowa for women with no insurance or documentation. I recently know a woman diagnosed who needs a hysterectomy but because of her status she is not finding help. This is sad because we are human beings.