A Candid Conversation Part 1

A couple of weeks before the surgery (and shortly after her cone biopsy) I sat Samantha down, pointed a camera at her and asked her a bunch of questions. In the next couple of weeks you’ll be seeing clips from that session of Q&A.

I had to break it into pieces as much for my own sanity as anything else.

It’s a very candid talk with my wife about what she had been through and was about to go through in the weeks ahead.

I hope it is an informative as it is interesting.

Thank you for watching,

~R

Cervical Cancer From A Man’s Point of View

When Samantha was first diagnosed with cancer I remember feeling a lot lost. I wanted to make sure I did everything right, but there was no place to go as a man to get information. I did learn a lot of what not to do from some of the website groups Samantha was on – stories of obtuse husbands abound. So I talked with a lot of other women and asked questions about what to expect and how I could be better prepared to make the coming battle easier on my wife. I learned a lot and I am so very grateful to so many women for their encouragement and insight.

This is just some of the lessons I learned and hope will help any man taking care of a woman battling cervical cancer.

Be patient

That doesn’t just apply to your wife. Be patient with yourself, too. You aren’t going to have it all figured out and your wife isn’t going to expect you to.

This is going to be a long, hard fight for both of you. She needs you in ways you probably haven’t been needed before. When you don’t get it right, do not beat yourself. The energy you waste beating yourself up is energy better used concentrating on the next obstacle.

If she is cranky, or distant it has nothing to do with you. Allow her the room to feel whatever it is she is going to feel. But be there.

Shut up and listen

Be a man and turn off the game when she comes to you. Don’t try to fix it, just listen and be compassionate. You can’t empathize. You don’t know how she feels. She doesn’t need you to. She needs you to shut your piehole, listen, put your arms around her. If she needs to cry, it doesn’t mean she’s broken. If she needs to yell or vent, it probably has a lot less to do with you than you realize. You might wake up in the middle of the night before a biopsy/surgery/appointment and find her wide awake in her own head. Don’t push her to talk to you. Let her lead. And if she doesn’t want to talk, kiss her, tell you love her, mean it.

Laughter is the best medicine

If your wife has a twisted sense of humor like mine does, don’t ignore it. Just wait until the stiches have had time to heal before you make her laugh too hard. But whatever her sensibilities, laughter really does help. I call it finding the funny in the dark place and I really do believe laughter is a powerful tool in the battle against cancer.

Take time for you

That may seem counterintuitive, but you need to keep yourself sane as much for her sake as your own. You’re not a jerk if you kick on the PS3 and have a beer while she’s doped up and asleep. She needs you as whole and sane as you can possibly be. If a Star Wars festivus does that, do it. If reading a book in the quiet hours of the night does it, do it. Whatever your thing is that keeps you grounded, find time to do that.

She is always a woman

I cannot stress this enough. There will be times when she will doubt her own womanhood. You better never doubt it. Never let her think you doubt it. Never let her forget that she is every bit the woman you fell in love with. If you’re a man at all you will end up knowing that she is so much more than the woman you fell in love with. Remind her of that. With words, with deeds, with touch.

This whole experience has been life changing for me. I always knew my wife was hot, sexy, gorgeous. But I never realized the depth of her strength and how that changes her beauty. She thinks she lost some of that thing that makes her a woman. I can honestly say I have never known anyone who is more woman than my wife. I am in awe of the woman I love. I suspect a lot of men are who go through this.

Sex

Don’t be a dick. When she is ready, and only when she is ready. Don’t guilt her into it, don’t make her feel bad for it, don’t be a dick.

Look, I love sex. So does Samantha. But there needs to be time to heal. My wife had a lot of her cut out and what wasn’t cut out was rearranged and put back together. That takes time to heal. Not just physically. I could have combined this with She is always a woman because how you handle sex goes a long way towards never letting her forget she’s a woman.

Touch your wife without expecting anything. I make out with mine (though, I suspect not as much as she’d like). Be affectionate. Talk openly about sex. But do not make her feel like shit because she isn’t ready.

Do not. Be. A. Dick.

Learn as much as you can

About her cancer. I was never going to learn as much about Samantha’s cancer as she would. She devoured every bit of information she could and was not shy about questioning her doctors every step of the way. I learned what her cancer was doing to her body, what things like “stage” “in-situ” “HPV” and “metastasize” meant. I learned which cancers were more aggressive and which were slower to grow. I didn’t want to feel like a moron in the doc’s office, but more than that I could not let her feel like she was going through this alone.

About her treatment. There will be lots of doctors appointments. There will be lots of opportunity to miss things. Don’t leave it to her to catch all the information that will be thrown at her. She will want to ask questions and she may forget. You will be her back up. And once the biopsies and whatnot are all done and the actual treatment begins, whether it is surgery or chemo/radiation, YOU will need to be the point man. When Samantha went in for her surgery, her doctor came to me during and after the surgery with updates, questions and legal crap. I needed to know what the hell was going on and so will you.

About her aftercare. My wife had surgery. Yours may have chemo or radiation. Or even all of the above. I asked a lot of women on support group pages what they wish they knew they should have at home post surgery. Pillows. Lots and big pillows. She will not be able to sleep in a normal position for awhile. Pillows can be positioned in any number of ways to make her comfortable. Panty liners or pads. Get a thirty pack at least. Better to have too many than not enough. Ask her what type she prefers before hand so you can have them waiting when you bring her home. A waste basket close to her bed. She will likely come home with a catheter so whatever hang ups you have about body fluids – get over it. Get yourself some rubber gloves if it makes you feel better about it, but you are going to have to clean up after your wife. A water pitcher. A pill box. Alcohol wipes (you might be able to get them from your doctor).

Finally

I don’t have all the answers, and every journey is going to be different. So think of this as a starting point rather than an all inclusive reference guide.

Share your insight; it can only help. Email me or comment and I’ll be sure to update/revise this. And please, share it with anyone yout think could use it.

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.

A Husband’s Thoughts

Hi, the Gorgeous Blonde’s husband here.

It’s been a week since her surgery. I took this video just before they wheeled her back:

I wanted to share it almost immediately but, I got this silly notion in my head “don’t tempt fate.” It’s stupid, I know.

I was scared. I imagine any husband in my shoes would be. I mean, here is this woman whom I love getting parts of her literally cut out of her because some tiny little asshat cells are destroying her. When you couple that with hours to just think… well, the brain is a sad place to be alone at a time like that. You pray, you cry, you plead with god, you expect the worst and lash out at god, you convince yourself there is no god because if there was (s)he wouldn’t allow shit like this. But mostly, you just hang on and hope the ride is over soon.

I know that what I endured through all of this is nothing compared to what she has and is still going through. But it really is funny (odd, not so much haha) to me that right now she is in our room absolutely miserable and I am here typing this with happy tears in my eyes because the singular thought that I have had since they wheeled her out of surgery is “SHE’S ALIVE!”

To go from “my wife has cancer” to “SHE’S ALIVE!” is a powerful swing of the pendulum. My wife is miserable, in pain, hooked up to things she would rather not be but, she’s alive. The misery, the pain, the everything else is eventually going to be a part of the memory of this experience. As will the cancer itself. What I will have left is the only thing I ever wanted to begin with: my wife.

Okay, that is pretty much all I have to say about that. I’m gonna go dote on her now. Bye.

Medical Trials and Tribulations

This morning I woke up at 4:15am, furious and unable to go back to sleep. No matter how much time I’ve had to deal with the cancer, and how generally ok with it I finally am, it still sneaks up on me every now and again. Mostly it sneaks up on me and steals my sleep. I don’t know the last time I got more than 4 or 5 hours at one time. It’s nothing overt – just a vague whisper in the back of my mind that reminds me that it’s there. That reminds me my own body is doing its best to kill me. That reminds me that no matter what anyone says, it’s still going to take a part of me – a part that like it or not, is the very center of a woman. And that reminds me that it’s just sitting there waiting for me to surrender. Most of the time I am able to tell it to fuck off or at the very least tell it right back that I’m going to kick its ass. And occasionally, it wins for the moment. I’ll conquer it eventually, but for this morning, it is winning the battle. Good thing I’m going to win the war.

So let’s see – to summarize things so far, a pesky little pap test that I didn’t even need came back with minor abnormalities that were just enough to keep me from deploying. Happy dances all around! I got the news around 4:30pm on a Wednesday, and by 9:00am on Thursday, the referral office was calling me from the base clinic with an appointment for further tests. Hmmm. Military healthcare moving quickly? Perhaps there’s more going on than I know – that never happens. So the following week, I headed off to meet my new civilian doctor. I had looked up his info on-line and found nothing negative, so that was a start. But he graduated medical school almost 45 years ago in China. Hmmm. Surely he’s had more education since then, right? I arrive at my appointment 15 minutes early, like a good patient, and check in with the teenage/early 20’s chick behind the counter who was more concerned with her gossiping coworkers than the patients in the waiting room. 20-30 minutes after my appointment time I was less amused. In all of my time in the military, I’d only ever seen one other civilian doctor – and that was a great experience. I had heard about these silly ‘wait times’ and ‘overbooking,’ but really had no experience with any of it.

Finally my name is called. Bingo! Ooh ooh! Pick me! A nurse ushers me back to take my vitals and review my paperwork. As she’s going over the paperwork and randomly highlighting things, I ask her if she/the doctor sees test results like mine very often. She gives me a puzzled look and says, ‘oh, sure. All the time.’ I raise one eyebrow and say, ‘really? Because I had read that the atypical glandular cells are fairly uncommon.’ She looks at me like I’m one of the special kids and says, ‘you don’t have that.’ *sigh* I then point it out to her on the paperwork, right in between 2 things she had just highlighted. (That’s right, who’s the moron now? Yay, me!) ‘Oh,’ she says, ‘that is rare.’ *double sigh*

Then I get herded (mooooo) back to the exam room. Where I wait. And wait. And wait some more. I spend my time checking out the room. Huh. Who knew cardboard boxes were so handy at holding up parts of broken furniture? Haven’t I seen this equipment on some movie that was set in the 1960’s? Seriously, did this guy buy all of his equipment and furniture at some hospital going out of business sale? When was that cleaned last? Ewwww! Not exactly confidence inspiring. That’s ok – I’m sure the doctor is great. Oh, here he comes now. ‘Hi, I’m Samantha. How are…’ OH. MY. GOD. He’s 410 years old and missing teeth. Not just a few – all of his top front teeth! For the love of God, man! You’re a doctor! Despite my urge to run, I decide to stick it out. He tells me he needs my test results. I tell him that the nurse set them on the table and point them out. ‘No, no,’ he says, ‘the actual test results from the base. That is just a summary.’ At least I think that’s what he said – I’m completely guessing here. I could understand about 1 in 4 words. The ‘doctor’ then leaves to go call the base clinic while I sit for another half an hour waiting on the base to send the ‘actual test results.’ In the meantime, I hear him in other exam rooms dealing with other patients. At least 2 others during my appointment time. I’m sure this is standard in some medical practices, but I wanted to punch him in the head. Repeatedly.

Finally he comes back in the room and tells me that he thinks the hospital sent over the wrong paperwork because he doesn’t see my test results. *triple sigh* I ask him if I could take a look at them and realize it’s the same lab results paperwork I had at home. It is just 2 pages of test results – that he couldn’t find. (Yeah, I know that doesn’t make sense. Imagine someone is holding a piece of paper with just their name written on it. Now imagine that person says they can’t find their name. Same thing. Honestly.) So after I point out the 3 specific lines with my abnormalities (yeah, yeah, I know my abnormalities should take up more than 3 little lines. Find an original joke), he asks me when the last time I had sex was, because he can’t do the biopsies if there’s a chance I’m pregnant. ‘That shouldn’t be a problem,’ I tell him, ‘I’m on depo-provera.’ (Injectable birth control, 99.8% effective, same effectiveness as if I’d had my tubes tied yaddah yaddah yaddah.) He couldn’t give a rat’s ass because there’s a 0.2% that I could be pregnant. ‘Abstain for 2 weeks, then come back with a negative pregnancy test – then I’ll do the biopsies. Besides, you look healthy – you don’t have cancer, so there’s no rush.’ *quadruple sigh* There was absolutely nothing I could do to change his mind. I later discovered that he’s apparently the only doctor on the planet that does that, and that the government health care system paid him $150 for about 3 minutes of his useless time. Awesome.

Fast forward to the next day – I’m on the phone with my medical insurance folks and discover I am allowed to change doctors or get a second opinion whenever I want. Who knew? Down side – it takes a little longer to get an appointment with the competent doctors. Next appointment is now a month away – just for a consult. Ah, the joys of living in the middle of nowhere – where all the really good doctors are over 2 hours away, and the competent ones 45 minutes away are still hard to find. So there I sit, with no answers and no one to ask except my old friend Google. And let me tell you, Google can be an over-informative bitch when you’ve got a month to research.

Fast forward to a month later. I head off to meet with my next doctor. I had verified with the nurse on the phone that he would do the consult and the biopsies at that appointment. ‘No problem,’ she says, ‘I’ll make sure he knows and the room is set up.’ Awesome! So we stroll into his office and it’s lovely. Very nicely decorated, very professional staff and generally very comfy. Ooooh, coffee and lemon-water and little dishes of nuts and candy while you wait. Fancy! After a short wait, I meet my new doc. He’s very reassuring and sounds like he knows what he’s talking about. ‘I’ve dealt with atypical glandular cells a lot,’ he informs me, ‘in fact, the other doctors in the area usually send me their cases because they aren’t familiar with it, and I’m more experienced.’ Whew. Finally, a doctor who knows what we’re dealing with. And then this, ‘you look slender and healthy – you don’t have cancer. But at your age and with these results, if you ever thought about having kids, you should have gotten pregnant last night.’ *sigh* Even with that, I still felt generally happy with him – he seemed like he knew what he was talking about and spent a lot of time explaining things to us. Even when he told me he wasn’t going to do the biopsies that day and to come back for another appointment, I still thought he was fantastic. But oh universe, you’re not quite done screwing with me and giving me incompetent doctors, are you? Nope. Not even a little.

More rambling later…for now I’ve squandered away the extra time from my early wake up with this. But on the bright side, I’ve finally got the little cancer voice all bound and gagged and buried out back somewhere. I’m sure that little bastard will work himself free eventually and come back to bother me, but for now, he’s not saying a word. 

The Gorgeous Blonde Redux

This was originally posted on twodudesblog.com

So a lot of you have responded positively to the Gorgeous Blonde post that I thought I would ask her to respond. Below is an interview with her.  I wanted her to say in her own words what it is that she is dealing with.

Please feel free to contact (and encourage her to start her own blog) at:

TheGorgeousBlonde@twodudesblog.com

The Gorgeous Blonde

(Originally shared on Twodudesblog.com)

I started my day thinking I was going to write about finding funny in the dark times. Then I got word that Hollie Stevens died. So I wrote this:

I live with a woman. Actually, I am engaged to her. Chances are pretty good that I am going to spend the rest of my life with her. Assuming she doesn’t turn out to be a nutjob. Or a whore. Right now I am laughing at her as she sits on the other couch across from me absent-mindedly pinching her lips into ducklips while she surfs the web. Yeah, she’s not likely to be crazy. It’s been two years and she has been mostly awesome.

The thing is she also has cancer. Cancer sucks. But you knew that already.

Knowing that she isn’t likely to end up a nutjob. Or a whore. And knowing that she makes me laugh without realizing and without even trying it’s a safe bet that we have the makings to last a lifetime or two. I could let the cancer thing scare me away but I have faith that it was caught in time and, though the road ahead is filled with some pretty crappy surgery and recovery, she will ultimately be cancer free.

In the in between is the battle. I have the easy part – I simply have to be that thing she needs me to be at that moment she needs me to be it. Sure, figuring that part out is about as easy as performing brain surgery on dingy in a hurricane, but still. She has to do all the heavy lifting; the biopsies, the surgeries, the pain, the recovery. Right now, she is the bravest person I know.

There is that small part of me that thinks I am only going to get to spend the rest of her life with her and that may not end up being very long. I don’t say that to be fatalistic, I say it because none of us are promised tomorrow – cancer or no. But she’s a fighter. And I think she likes hanging out with me. Or maybe she just likes that Dexter (our dog) has a friend when she isn’t home. Either way, I know she isn’t about to give up.

So I do what I can. I try to be the best man I can. I don’t have to find the perfect words; I just have to put my arms around her. I make her laugh – often times by poking fun at the cancer itself. It’s my way of saying ‘fuck you cancer!’ and I think she appreciates that. I shut my piehole if she needs to vent. I remind her that there is a part of her that the cancer will never be able to reach. There is that part of her that is every bit the woman I fell in love with that cancer could never take away.