Cervical cancer used to be the leading cause of cancer death in women. Thanks to better screening, detection and treatment, survival rates have increased dramatically. Each year in the US, about 12,000 women are diagnosed with cervical cancer, and approximately 4,000 die from it. Most cases of cervical cancer are caused by the HPV virus, a disease most frequently spread through sexual contact.
A while back now, my friend Emily confided something in me. She told me that she had cervical cancer and then waved her hand around dismissively about how she had to have surgery again but it was no big deal, right?
NBD. Uh huh.
I knew it was a big deal then, but I sensed that what she needed at that moment was a really inappropriate joke, so I said something naughty about her lady bits and we laughed. Turns out that I was right. It's been a long few years filled with a roller coaster of emotions for her. I asked if she would be willing to share her story here and she was kind enough to oblige.
I must warn you, though, she is my friend. So she's totally inappropriate. And candid. And honest. And real.
This is her story.
While I was sitting in Starbucks waiting for her to come in, I realized that I hadn't written down a list of questions to ask her. I figured that it wouldn't much matter since the two of us rarely have a hard time finding things to talk about, and this time, we had a specific topic.
A serious one.
We usually tell each other fart jokes.
No, I'm not kidding.
She sat down and I could tell she was nervous. This isn't a story that she has told many people, not even really to me, not in much detail anyway. I told her that I was completely unprepared and didn't write any questions down. She winked and whispered, my vagina still works. Everyone always wants to know about that!
Before we got to the story, she promised herself she wasn't going to cry, immediately teared up, then told me why she hadn't really told anyone. It's a reason I completely understand.
She didn't tell anyone because she was afraid that if she said the words out loud that it would be real. It was easier to pretend like it wasn't happening when other people were none the wiser. If other people knew, they would ask how she was. She didn't know how she was and she didn't even want to think about it. She didn't lose her hair. She didn't have to go through chemo and radiation. She just had to have surgery, so she felt like it wasn't even a real cancer anyway. It was all weird and she didn't want it to be weirder than it already was.
It was easier to tough it out alone than to face reality and say the words out loud.
Em has three children, all boys. Her middle son is one of Mini-me's best friends in the whole wide world. They are just like peas and carrots.
None of their deliveries were simple or easy. She went septic after the first and needed an emergency hysterectomy immediately after the last was born through Cesarean section.
She has never really even processed the loss of her future fertility and admitted as much. This whole experience is forcing her to do it now. The finality of it all sinking in. At the time of the hysterectomy, the gynecologist removed her uterus and about half of her cervix, needing to leave part of it because of swelling.
A year and a half later, she needed to have the remaining portion of her cervix cauterized for bleeding.
She was always on top of her annual checkups and Pap smears. She had never had a single abnormal Pap.
In the fall of 2012, she knew she had to go in to the doctor to have her check up before her insurance stopped. She was in the middle of divorcing her husband and wanted to make everything was taken care of while she was still covered. Had the Pap on a Friday, got a phone call on the next Tuesday. Never a good sign. There was some concern.
She needed a biopsy.
It was cancer.
Confused, she asked him how could this happen? I've been married forever.
The answer? HPV can lie dormant for years, decades even, then show up and cause trouble without warning.
In some ways, the impending divorce saved her life.
Her doctor sat her down and talked about options. It was early, it hadn't spread. Instead of doing an invasive surgery, he could try and remove what was left of her cervix in an in-office procedure. As long as the margins were good, this might be all that was necessary. She agreed, had the procedure, almost all of the cervix was taken.
Of course she sent me a text with a picture of the pieces of her cervix in a jar.
Because that is the kind of relationship we have.
The margins were clear, everything looked good. She was relieved and ready to move on with this scary episode behind her.
Three months later, she had to go in for a check up. She was supposed to be declared cancer-free. She wasn't.
The cancer was back and she was out of options. She had to have the full surgery.
She's now had four surgeries in four years.
This time, both fallopian tubes, one ovary and what was left of her cervix were removed. The procedure was slightly complicated by the fact that her cervix had fused to her bladder. The healing was rougher this time around. A few weeks later, I sat by the pool with her and told her really bad jokes. But not the kind that make you laugh too much because that hurts.
Some of the jokes just presented themselves through no fault of my own. And that's totally an inside thing.
Just after the surgery, she used the C word for the first time with her boys. They'd known that Mom was sick before, that sometimes she didn't feel good, but this was the first time that they were told what was actually going on.
The first time that Mom and cancer were put in the same sentence.
Trying to explain why she was emotionally all over the place, she told them that when women have hormone changes, like when they have a baby, their bodies can't always manage the changes well. Since one of her ovaries was taken out and her body wasn't really sure what was going on with the sudden hormone drop, she was crying a lot for no reason.
Her middle son went to Sunday School at church the next day and said this:
"My Mom has cancer but her body thinks she just had a baby."
She hadn't told hardly anyone at church anything, and all of a sudden had a lot of explaining to do.
As word began to spread, months after she had actually been diagnosed, she realized in a hurry that having other people know wasn't all that helpful. She still didn't want to talk about it.
There was more though, this other part of it, the fact that this is the type of cancer that carries a stigma with it. People make assumptions about women with cervical cancer, none of which ever applied to her. She was married, monogamous and had been religious about checkups. This wasn't supposed to happen to her.
But it did.
We talked about this aspect of it for a while, because we both feel like all the education towards vaccination against certain strains of HPV has actually attached more of a stigma to cervical cancer than there ever was in the past.
It isn't just a cancer that women get from a virus that most people carry as adults anymore, it's a cancer that women who have sex get from partners who are infected. It's an STD gone bad now.
Cervical cancer has always been most commonly caused by HPV. People have always had HPV, men and women. It's just that now everyone talks about it. Which is good in some ways, certainly, but bad in others because it makes this cancer more than just a disease...it makes it something that, to some degree, is shamed.
Think about it.
It's impossible to have any conversation about the vaccines without it turning into some religious debate about condoning promiscuity and teen sex. Married, monogamous women can still get HPV, can still get cancer, can still die. Period.
Emily is proof of it.
When asked what she wants people to know, aside from that truth, she said that just because you are married or monogamous does not mean that you should feel comfortable waiting longer between Pap smears. She had never had an abnormal result, and had been dutiful about annual exams, before her diagnosis.
Next month, she goes back again. For another checkup.
She's been to the checkup where everything was supposed to be fine and it wasn't. She's scared.
That's the thing about cancer that you learn the hard way. Once you have been there, you live in fear of it coming back. It changes everything.
If you want moral support, Em, I'll go with ya. I can't imagine what the doc would do with both of us there though. That's got to be too much inappropriateness for such a tiny room.
Thank you for being brave enough to share your story.