Cervical Cancer, HPV and Burkas

Today’s going to be a little different of a blog entry for me. All of this has been rattling around in my noggin since I got my diagnosis. Hope you enjoy. If not, oh well – no one’s forcing you to read this. I hope. 

Quick, name the color of the ribbon for breast cancer awareness. Easy, right? Everyone knows it’s pink. Quick, name a major charity that supports breast cancer awareness. Again, easy. Susan G. Koman. Quick, name a celebrity who has or has had breast cancer. Easy – Sheryl Crow, Christina Applegate, Kylie Minogue, Edie Falco, Cynthia Nixon…and I’m sure I could come up with a few more if I tried. Now try this – name the color of the ribbon for cervical cancer awareness, a major charity that supports awareness, and a celebrity who has it. Go ahead. I’ll wait. Oh and no using google, either. (Or Bing, or Lycos or whatever other hipster search engine you kids use nowadays.) Yeah, I didn’t think so. Don’t feel bad – I didn’t know any of that either. But the answers are: a) teal and white, b) there really isn’t one, and c) there aren’t very many, and the ones who do, you’ve never heard of.

Fun stuff. Since my diagnosis, I’ve been looking everywhere for information and the one thing I’ve found is that no one wants to talk about cervical cancer. Shhhhh – it’s icky. People don’t mind talking about breast cancer and raising awareness, because let’s face it – boobs are sexy and pretty and have cute nicknames and everyone loves them. ‘Save the ta-ta’s!’ Cervixes (cervicii? cervixen?) are none of those things. They don’t even have a cute nickname for pete’s sake. But they’re kind of important and are a part of the vagina – which I’m pretty sure a lot of guys at least like – but it’s still a little taboo or embarrassing to bring up. I decided to say screw that – I’m talking about it. It’s a part of the female body and dammit, no one should be embarrassed to talk about their bodies. No one should be embarrassed about cancer either – the more people that are aware and talk about it, the more people who might actually stop hiding from their annual exams and stop suffering in silence.

I’m guessing another reason that no one wants to talk about it is because most cases (about 70-80%) of cervical cancer are caused by HPV – human papillomavirus. And ewwwww – you only get that through sex! Whore! Harlot! Whoa there – before we start tossing women back in to nunneries and branding them with scarlet letters, howzabout we take a look at the facts. There are approximately 120 types of HPV and about 15 of them are considered ‘high-risk’ – they can cause cancer. And surprise! You don’t have to have sex to get even the high-risk types. The others cause various other charming symptoms, or no symptoms at all. If you have a plantar’s wart, you have a strain of HPV. *gasp* What have you been doing with your feet!?!? But seriously, doctors estimate that about 80% of Americans have HPV – so before you get out your best throwing stones and your burkas, do some damn research. Oh, and while you’re at it, research the snazzy new HPV vaccine if you have young women in your life that you care about. Almost kinda sorta political type statement here – while I don’t agree with the government or schools mandating the HPV vaccine for kids, I fully support young ladies getting it. Oh, and young men too. Because gals aren’t the only ones getting and/or spreading the virus. Menfolk may not develop symptoms from the high-risk strains, but once they have it, they continue to carry – and potentially spread – the virus for the rest of their lives. One last snazzy fact about HPV? You could have gotten it 30 years ago and never knew it. Until it decided to rear its ugly head and start causing some problems. And once you have it, you always have it – it may go into hiding and not be doing a damn thing other than hanging out, but it’s there. It won’t even show up on a test for it unless it decided to come out and start wreaking havoc. If it’s in ‘remission’ it’s undetectable. Fun stuff, huh? And that boys and girls, is how oodles of women and men go through lives completely unaware that they even have it.

So if you know someone who has cervical cancer (besides me), please do your best to treat them no differently than you would if they had any other cancer. It’s not their fault, they didn’t plan it, they didn’t ask for it, and they don’t need people judging them. All they need is for you to agree with them that it sucks and let them know if there’s anything you can do, you’ll do it. Sending goofy cat pictures, random funny e-mails and texts that just say ‘hi’ are wonderful if you aren’t sure what to say. Silly things like that let the person know you’re thinking about them without pressuring them to talk if they don’t want to, and it just makes the day brighter. Trust me on this. Ooooh, and no matter how much you may want to, do not say these words – ever: ‘Just remember, things could always be worse.’ No shit. I could have cervical cancer, breast cancer, be having a heart attack while I catch on fire and find out bacon is extinct – and there could always be something to make it worse. But you know what, ‘just’ having cancer kind of sucks. Some days we are completely aware that things could be worse and we appreciate that what we’re going through isn’t the absolute worst thing ever. But unless you have a direct connection to our brains, you have no idea what’s going on in there and you will probably say that at exactly the wrong time. Sometimes all that sounds like is, ‘suck it up, buttercup. It’s not that bad.’ And that sounds like you’re diminishing the fact that we have cancer and the shit storm that is going on 24/7 in our heads. And then we feel even worse because, you’re right – it could be worse and here we are all feeling sorry for ourselves. Really, it’s a no-win situation for all involved.

Hmmm what else….oh – that 24/7 shit storm in our heads? Yeah. It’s a hoot. From what I’ve gathered on-line on a few different cancer chat sites, it’s completely normal and we all go through it. It’s called different things by different women, but the most common is ‘cancer head.’ It’s that voice in the back of your head that is there from the second you get a diagnosis. It apparently starts to go away the longer you’ve been cancer-free, but it’s always there in some shape or form. For me, it was that voice whispering ‘cancer’ at the oddest moments. It was that voice that was trying to convince me I was going to die. It’s that voice that has made it impossible for the last few months to simply sit and watch a TV show or read a book – nope, no downtime, because that’s when it gets the loudest. It was that voice that I could never shut up completely. What’s extra special about cancer head is that when you finally do get its ugly little mouth duct-taped shut, it just sits back there and stews and comes back with a vengeance when you least expect it. I finally learned to stop trying to avoid it, and gave it a few minutes (ok, maybe hours) every day and facing all of those fears, worries and possibilities head on. And hallelujah, that worked. Mostly. Even just an hour of reading things about cancer on-line every day (which can get really depressing) was better than ignoring it. And honestly, I’d rather be educated about what was going on with my body anyway. I think I found the end of the internet and read every possible article, website, chat board and research paper ever written on cervical cancer. And that turned out to be a good thing. Because it’s my body, my health and my responsibility to know as much as I can – and there are a lot of scary doctors out there who have no freaking idea about abnormal pap smears beyond the most basic and common of abnormal results. But that’s a whole different blog.

For now, I think I’ve gotten a lot of what’s been rattling around in my head out. Is it a little disjointed? Probably. Is it a little rambly? Probably. (And yes, I’m apparently making up words now. I kind of like rambly.) But it all needed to be said. I’ll get back to the rest of the story tomorrow. Or the next day. Depends on how much longer I’m grounded to my bed. For now I think I’ve said about all I have the energy for.

  1. Joyce Dardem says:

    There’s a small charity called ” Below the Belt” and it’s run by friends of mine. Chek it out. Thinking of you and your cervix! That sounded kinda pervy…

  2. Jackie says:

    Hi! Thanks for the great post. Sending you love, support and healing thoughts from Monterey.

    • samiam0403 says:

      Thanks for the love and healing thoughts from Monterey, Jackie! I miss Monterey – hoping to get all healed up and back up there in the not to distant future! Glad you liked the latest rambling on the blog.

  3. jason says:

    Hi

    • samiam0403 says:

      Hi Jason!

  4. Kristen says:

    Great post! I do want to put info out about the hpv vax though. From what I know of it, It doesn’t even cover the strains that cause cervical cancer and the vaccine has caused many deaths and serious disabilities. Whatever a person decides is right for themselves, I highly recommend you research what is in it, risks vs benefits and adverse reactions. That being said, I am so proud of you and the courage you have shown. I love you so much and am praying for you!!! Lots of hugs and smooches!

    • samiam0403 says:

      Hi Kristen! Thanks for reading. You’re right – the HPV vax doesn’t cover all of the high-risk strains, but it covers the 4 worst that cause 70-80% of cervical cancers. And it covers the worst strains – 16 and 18 – that cause the worst, most aggressive cancers. I have researched it, and still recommend it. Risk vs reward, you know? It’s not just the cancer that it prevents – it’s the years of biopsies, colposcopies, LEEPs, CKCs, and the watching and waiting to see if that pre-cancerous abnormality will ever turn in to cancer. That’s also why, in my post, I told folks to research the vaccine first. I know vaccines aren’t for everyone. But thank you for bringing up an excellent point – everyone needs to research and decide for themselves. Thanks for the prayers, sweetie! Miss you much and I love you too. Hugs and smooches right back at you!

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