OUR STORY By Sandy and Lorrie,
the HPV Leep Test marathon of STDs
Sandy
Life was going along as it was supposed to. I was at home caring for my nine-month-old daughter when I got the phone call on a Friday in late August 2000. That’s when I learned that I had precancerous cells on my cervix and was later diagnosed with severe cervical dysplasia. I had a LEEP procedure done and was told I would need to follow up every three months for a year and then every six months for four years. After that, I could return to an annual Pap schedule if all my Pap tests were clear.
They were all clear!
During my ordeal, I had alerted my sisters Donna, Lorrie, Debbie and Cary Anne about what I had been diagnosed with and that they needed to make sure they had their STD Lab tests because if this could happen to me, this could happen to anyone. As far as I knew, they had been getting tested annually.
Lorrie
As a family, we were all scattered around in states of mind and location. But I did not doubt as I heard and felt Sandra’s urgency to “Go get your Paps!” that all four of us girls she was pleading with did just that. How could anyone not hear the important information she passed us? No doubt we all came together as sisters and had our Paps. Sandra was right that if it happened to her, it could happen to us.
I scheduled my (admittedly overdue) Pap. And I was happy and excited to let Sandra know all is good here! But I wanted to let her know I heard her and went. I felt proud that I had my Pap. Back in 1980, I had a scare with a bad Pap HPV Type Test result. I was the lucky one to have my body fight the virus. What I did next was go on with life. I never educated myself more on cervical dysplasia or cervical cancer. I wish I did, so I could have been able to help my sisters-Sandra as she was going through her battle and later with Cary Anne.
Sandy
Fast forward to August 2007. My little sister Cary Anne was admitted to the hospital after she haemorrhaged during the night. She called me the next morning, told me where she was and that she would see me after I got off work. There was no reason for me to go to the hospital because they were running a range of exams, which included HPV Home tests, and I wouldn’t know anything until then, anyway.
The STD Profile tests screen for 10 infections. But it was not enough. About 100 different blood exams were also needed. Cary Anne had been complaining for months that she was having very unusual heavy periods, breakthrough bleeding, and was very frail. She was on Procrit® injections for iron, which I administered for her. The doctors told us that it was probably fibroid cysts on her ovaries, but they were running STD Home tests. I remember one doctor asking her when her last Pap smear was. Cary Ann then asked me when I had my ordeal of HPV Viral tests. And I answered 2000. She turned to the doctor and explained that was the last time she had a Pap test, and my heart sank.
The battle begins
I immediately knew the severity of the situation and knew we had an uphill battle that I couldn’t fight alone. My sisters rallied around Cary Anne and did all we could to help Lorrie. Cary Anne used to call me every Sunday at 9:00 a.m. I’d hear the music of the CBS Sunday Morning Show, and the phone would ring. I’d smile because I knew it was Cary Anne waiting at work for her boss- our time to talk, even though we were 100 miles apart.
She would talk about everything from her only son Tyler’s school to what she and San (Sandra) were up to. She also mentioned heavy periods, backache and being tired. Cary Anne was 10 years younger than me and was where I had been –hard-working, crazy mom, wife, sister and friend. We talked about her body changing and how she should see her doctor with her period changes. But as we know now, some of us put everything else ahead of our health and much-needed doctor STD visits. It was 2007 when it all came together with HPV urine Test results and doctors’ opinions.
We did have one last week. I remember it like yesterday, the fun sister’s weekend in Atlantic City! Cary Anne had been going to the HPV doctor to get iron shots from San, but she was just in a bad spot, and we all thought all would be okay. They would find out why she was so frail. Life keeps moving, but it was about to change after that weekend, and states of mind and location would be together again.
Sandy
The HPV diagnosis, as suspected, was not good. Cary Anne was going to be treated for pain management, but there was no chance of a cure. Her HPV Variant Test showed a dangerous type of virus. Further exams found cancer,r, which was terminal and spreading rapidly. Cary Anne was diagnosed with stage 4b cervical cancer, and there was almost nothing the doctors could do to help her.
We needed a plan and help, and we were just at such a loss and didn’t know where to turn, so we did what we did best. We came together as a family and did the absolute best we could. My out-of-state sisters each rotated weeks to come to help care for our little sister, the baby of our family. There was constant HPV panel testing at the start. Then, she had one chemotherapy treatment and several radiation treatments before the cancer began to take over her liver.
From then on, she could no longer live on her own. She needed to leave her apartment and come live with my family, which she was unhappy about. She wanted to remain independent and viewed herself as a burden. This was not the case; I wouldn’t have had her go anywhere else. Cary Anne had a very close group of friends who stepped up to the plate and helped us in more ways than one. They even launched a very successful fundraiser to raise medical expenses.
Lorrie
Weekend after weekend, making the exciting and scary trip up and down I-95 was what I lived for. The states were together, keeping busy, taking her from radiation treatments to moving in with Sandra and trying to maintain some normality. Our minds were all in the same state. Sisters and friends were all for The Cause.
Sandy
The doctors explained to Cary Anne and me that we had come to a point where nothing else could be done. We were to go home and enjoy our time together. How do you do that? I had no idea.
The doctors told me that she had several months and that they really couldn’t put a time on it. I had hospice come in, but Cary Anne was in denial and thought it was too early for all that. Everyone had returned to their states, though we’d stay in constant contact. She was released from her doctor’s care just around Thanksgiving. I told my sister she would not make it to Christmas.
I knew in my heart that her will and fight were over, and just like that, within three weeks, her health deteriorated. She became very confused, and things went downhill fast. I called my sisters one last time to make the trip back to New Jersey.
Lorrie
It all goes back to that Pap STD Test. If we only had known how long it had been. All four of her sisters cared for her in her last hours; we stayed with her until her last breath, just like she would have done for any of us.
Sandy
I miss my sister daily; I wish she were still with me. But she isn’t, and the only thing that I can do at this point is to try to make sure no one else loses their sister to this deadly disease.
We need to bring awareness to HPV and cervical cancer. I have vaccinated my 13-year-old daughter. My 12-year-old son is vaccinated this year during his annual checkup. I don’t want another mother, grandmother, sister, aunt, daughter, niece, wife, or girlfriend to lose their battle with this very deadly but preventable disease.
Lorrie and Sandy
Now, six years later, still in different states and minds, we do what we can to spread awareness and prevention about HPV Testing and Cervical Cancer. Sandy joined the National Cervical Cancer Coalition (NCCC) in 2009 and is now the New Jersey Chapter leader for her third year. One of the cornerstone rules is STD Swab Tests. Lorrie started her North Carolina Chapter in 2012. Our goal is to tell anyone who will listen that HPV and cervical cancer are real, and we need to educate our children before sexual activity. This is preventable; with some knowledge, we can save lives!
I thank Cristina Ryan, my sister’s best friend, who founded the New Jersey Chapter of NCCC in 2009. Originally, I wanted to avoid being involved; it was nothing I ever thought I would or could do, and it just wasn’t on my radar. Today, two years later, as Chapter Leader, I couldn’t imagine not being involved and doing what I do. It’s become our passion!