Helena

Age at diagnosis: 29

Diagnosis: Cervical cancer (unspecified)

Stage of cancer: No stage specified

How my story begins: I am a single mother to two beautiful children, ages 10 and 4. I was already involved in Advocacy, Disability Rights Advocacy- I have autism. I received National and International Advocacy Awards for improving the futures of students with disabilities in the United States, Canada and the UK. I published two books- I traveled often. I thoroughly enjoyed life.

I started having a lot of discomfort near my pelvic bone. The pain would shoot down my left leg. I would go to the urgent care and be told it was due to a car accident I was in years prior (2010). I suffered a spinal injury in that wreck, so I accepted that maybe this was just pain from it. I had lived with the pain in my back from it for so long.

But then the pelvic pain got worse and my periods became very intense. I went from a 6 day normal cycle to a 3 day cycle. I again went to my local women's health clinic. I was told it was stress-induced and given no exam. I wasn't accepting the "stress" excuse. I am autistic, my Civil and Human Rights are violated almost daily and I speak in front of thousands of people- I can handle stress. Stress has never affected my physical health this much.

I started to bleed after intercourse in October 2017. I again asked for a Pap from my local Women's Clinic but was told their scheduling was out until January without a referral.

I ended up driving an hour and a half away to a Planned Parenthood Clinic in Southern Ohio. I never got my first Smear until April 2nd, 2018. April 2nd is also World Autism Awareness/Acceptance Day. It was a somber moment for me. But the result of that smear showed abnormal cells and HPV.
Finally, with that result, a doctor with my local women's health clinic fit me into his practice- did a biopsy- and two weeks ago- I was diagnosed with Cervical Cancer.

How I felt after diagnosis: I had my 4 year old in the room with me when the doctor told me. So I didn't want to cry. I just asked her when my hysterectomy would be. I tried to shrug it off. But then I asked, "I am going to live, right?" and the doctor just looked at me. I broke down in the car in the parking lot.

Telling my family and friends: I don't really have any family. I called my sister who lives in Iowa and told her. She is coming in for my surgery. My friends actually laughed and referred to it as "Vag Cancer." Pretty sure I am going to have better people in my life after I beat this cancer.

My treatment: Right now, my treatment consists of a total hysterectomy. I also have to have my ovaries removed. Due to family history of Ovarian Cancer, it is not in my best interest to attempt saving my ovaries to avoid menopause. I am okay with this decision. I fear going into menopause at 29/30 yrs old. But I want to be alive for my children.

What I did to help myself: I have switched my diet and cut down on sugar intake. My oldest child has made an Exercise Plan for me- totally looking forward to that.

Where I am today: I am in limbo today. But reading other Cervivors stories helps me remain calm.

What I want other women to know: It is okay to not be okay.

How I will try to help others: I want to use my already established advocacy platform and now go into schools and educate the youth on the importance of HPV vaccines.