Mawwage, that bwessed awangment, that dweam wifin a dweam…

As promised, part deux of the wedding/Vegas saga. I’m not quite as angry as I was yesterday about the two people faking cancer, but still disappointed in people in general. So to lighten my mood, it’s time to reminisce and continue the story of a very, very good weekend. But yes, I still want them to be hit by a bus and/or kicked in the crotch by karma. That will never change. I’m kinda bitchy that way. Surprise! 

So there we were – someplace I never pictured myself being – at a wedding chapel in Las Vegas. Lots of hugs, then as more people showed up, more hugs. I was amazed that when all was said and done, we had probably 40 or 50 people show up. And it was fabulous. It was both beautiful and casual. We kept with tradition and had my dad walk me down the aisle and give me away, but it was relaxed and stress-free. All we cared about was that a lot of people who loved us had showed up, and that we were making things official. The ceremony was perfect – just enough traditional talk of love and vows to get people teary-eyed, and just Vegasy enough to have some laughs as well. I wasn’t concerned with pretty pictures or getting my vows right or how my hair looked – all I was concerned with for that time was how damn happy we were.

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Once we said the words and did the smooching, we headed outside into the entirely too bright sunshine. More picture taking, more hugs. After the milling about and mass confusion that only occurs when large families gather was done, we had our plan for the rest of the day. We kidnapped my parents and Kris and went back to Fremont Street. Rudy and I zipped up to the room to change (that’s all, honest!) and met back downstairs. Next up? Ziplining! Yay! So we meandered down to the end of the street to buy our tickets and then head upstairs a few levels to the launch platform. My loving husband was starting to get a little uneasy though. And when I say a little uneasy, I mean sweaty palms and telling me how much I was going to owe him if he lived. This was all before we had even bought the tickets.

Tickets were finally purchased, and we headed up the elevator a few stories to get to the launch platform. I knew it was over when he stepped out onto the scaffolding, got his harness on and then looked down as the scaffolding swayed in the wind a bit. Yup. Done. He apologized profusely and bolted. *sigh* And I, being the loving, concerned wife, did what any good woman would do and continued on my way across the scaffolding to get hooked on to the line. I’ll admit, it was a little scary up there, but in a good get-the-adrenaline-pumping way. And on the bright side, I met a great couple (you go 4 at a time) who were going at the same time. They were a hoot – he was dying to do the zipline, and she was terrified. But she still went. And yes, I pointed that out to Rudy repeatedly for a few days. Because that’s how I roll. Needless to say, it was a blast. I’ve ziplined in the jungle in Honduras, but this was totally different. There was so much to look at as you were flying down the wire – people below you, the canopy above you, the buildings flying by – that it seemed very surreal. And now I can’t wait until they build the bigger, better zipline down Fremont later this year. I’ll be there. Ziplining solo.

After my brief flight, I found my parents, Kris, and my earthbound husband. More mockery ensued, then we proceeded to meander around Fremont Street for a while and then head back to the hotel for some lunch. Or the lunch may have been before the ziplining…it’s a blur I tell you! But as usual, all good things must end and we had to get my parents back to their hotel to pack and check out. Unfortunately, they had to be at the airport by about 10:00pm for a late flight home, and we still had a party to get to.

Luckily, Rudy’s aunt who was hosting the reception/party lived not too terribly far from the airport, so we headed there in the afternoon for what was a rockin’ reception. I am still touched by everything that his family did for us. There was food everywhere, bottles of champagne, new champagne glasses for Rudy and I to toast with, cupcakes, a wedding cake and last but not least, the most welcoming group of folks I’ve ever met. I thought my parents might be a little overwhelmed at the sheer volume of Rudy’s family, but they were welcomed and pulled in to the fold as if they’d part of the family for years. I loved seeing some of my favorite cousins chatting up my folks, and my folks chatting right back and having a ball. Toasts were made, more hugs were given, and it was a perfect night. I love that 6 months later, my parents still ask about the Vegas clan every time we talk.

After a really lovely day, the time had come to get my parents to the airport. Boooooooooo! I’m sure they were looking forward to getting on the plane and sleeping on the long flight home, especially considering that they’d pretty much been running for 2 days straight. But they didn’t let it show as we got to security and they gave me hugs that seemed to be both unending and entirely too short. There were more tears and more hugs, then I had to let them go. I am still, to this day, astounded that they went through all of that effort, time and money to spend less than 24 hours in Vegas for us. But I really shouldn’t be surprised – that is who they are. An amazingly supportive, incredible and loving couple. I couldn’t ask for better parents.

Party over, parents heading home, 10:30 on a Saturday night in Vegas. What to do, what to do. Oh, I know! Head back to the hotel and meet up with friends for a few adult beverages and people watching! As we sat in the indoor/outdoor bar at the Golden Nugget, we realized what all the noise from Fremont Street was – Skid Row and Warrant in concert to celebrate our marriage. Orrrrr just to try to make some money with the vague remnants of their 80’s bands that were still alive. Either way, it made for some fabulous people watching as we sat and chatted (ok, screamed back and forth) with our friends. It made for a great end to a truly great weekend.

We may have gambled a bit more after that, we may have gone back upstairs. I have no idea, and really – the details and order of events don’t matter. All I know is that the ‘one last party’ weekend had turned into something amazing and beautiful and joyous. It’s what every wedding weekend should be – low stress, full of love and laughter, and simply happy. That’s all. And when it comes down to it, we accomplished the actual goal of the weekend – I got 3 days where I completely forgot I had cancer. And it was perfect.

I think that what infuriates me so much about people who pretend to have cancer for various reasons is that anyone who has ever been given a cancer diagnosis honestly just wishes they had never heard those words – that they could just forget for one day. It shakes you to your soul. Your own body is doing its best to kill you, your mind goes places that are truly frightening, and you feel more alone than you ever dreamed you could. It is an awful, awful thing – and for someone to pretend…it boggles the mind. If they only understood that a cancer diagnosis, no matter what stage, is horrifying and all-consuming. At least for a little while. It’s been 6 months for me, and I still have days where it’s all I think about. Every time I start to forget about it, I remember I need to make my next 3-month follow up appointment with my oncologist. Or I get random pains that make my mind race and wonder if it’s back. I know that someday it will fade and not be so front and center – probably in about 4 and a half years (but who’s counting) when I get my official ‘cancer-free’ from the doctor. *fingers crossed* But for now…all I can do is shake my head and wish that people who pretend to have cancer could walk in a real cancer patient’s shoes for one day.

2012 in review

HOLY COW! 1500 views from 25 countries? Fine…I’ll keep writing. I’m a sucker for peer pressure.

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,500 times in 2012. If it were a Dreamliner, it would take about 6 trips to carry that many people.

Click here to see the complete report.

 

 

Mawwage. Mawwage is wot bwings us togeder tooday…

Well hello there. Remember me? I’m baaaaaaaack. It’s been a rough couple of days for me. As it turns out, a cervical cancer support group I’m a member of is currently tearing itself apart. Turns out 2 very popular ladies with stage 4 cervical cancer, who got a large amount of attention from the rest of us, were frauds. One was simply looking to defraud actual cancer patients out of money (and the FBI is now involved) and one has serious mental issues. I am angry and disgusted. Luckily, I wasn’t extremely close to either of them unlike a lot of the girls. But it still infuriates me that someone would pretend to have this horrible disease. And the fact that they befriended a 3rd girl with actual stage 4 cancer and broke her heart…I want a bus to plow them both down right now. Or for karma to give them a swift cancer-kick in the crotch. So since I’m on the verge of losing all hope in humanity, I’m going to get back to writing about happy things. For a change. 

Last I left off (yeah, yeah, I know…it’s been a while – quit nagging), I was reeling from my official cancer diagnosis. Rudy and I decided that since I was going to be laid up for heaven knows how long, that one last party trip was in order. There really wasn’t any debate about where since we only had one weekend available to go and only a few days to plan – Vegas was the perfect choice. We made a groveling phone call to our favorite casino host and asked if there were rooms available with our fingers crossed. Chances were slim since we only gave him 3 days notice, but he happily responded with a free room in our favorite tower for 3 nights, food and beverages comped, and a few hundred dollars to play with. Thank you Golden Nugget! So with that secured, we started trying to figure out what we wanted to do while we were there. Besides the obvious drink, gamble, eat, people watch and repeat. I decided on doing the Fremont Street zip-line, and talked my wonderful man (who is terrified of heights) into trying it. Victory! Then my wonderful man brought up what he wanted to do in Vegas. That’s right – mawwage. (Sorry, Princess Bride speak is the only way I can say it.) We’d batted the idea around for a while, but it was always later. Next year. Some other time. Suddenly we were facing the possibility that there wouldn’t be a next year. And it was sobering. It wasn’t just the idea that the cancer could be further along than we thought. There was also the very real possibility that something could go wrong in surgery, and Rudy would have zero say in life or death decisions for me. Then there was just the simple fact that we really, really love each other and it just seemed right.

So like a bad daughter, I called some Vegas chapels first to see if it was even a possibility. No sense in telling the family we were getting married if we simply couldn’t do it. Or at least that was the rationale at the time. Now I realize I’m just a big dork, and should have called them first. Luckily for us, after some googling, the exact chapel I wanted (and by wanted, I mean non-cheesy and pretty) was available for Saturday, July 21. But we only had 2 options – the first time slot of the day at noon, or 10:30pm. As much as I didn’t want to have to wake up early (and yes, being dressed up and driving somewhere before noon in Vegas IS early, dammit!), we were hoping some friends and family might be able to make it. So we went with noon. And THEN I called my parents and told them the good news. It felt really good to have something happy to tell them for a change. And they were perfectly, wonderfully excited for us. I told them that I picked a place that would let them watch the wedding on-line because I knew they (among others) would kick our butts if we didn’t. I told them I would call them before the wedding, and leave my phone on speaker if I was allowed so they could hear. I wanted them there so badly, but considering the wedding was now 4 days away, I knew there was absolutely no way they would be able to make it. And it meant the world to me that as much as they wanted to be there, they completely understood us going ahead with it without them.

So more friends and family were let in on our big plans, and the outpouring of love and support was lovely and touching. What came next was both unexpected and wonderful. First, a very good friend who lives in Vegas told us he would do his very best to take off work that day and come to the wedding. And he did. With the added bonus of his quietly charming husband coming with him. Second, Rudy has a very large and very incredible branch of his family who live in Vegas – and they were adamant about both coming to the wedding and putting together a reception. (Side note – they all told me in case of divorce, they’re keeping me. I’m awesome.) Third, Rudy’s best friend in the world who lives a ways from Vegas, dropped everything to drive the 500+ miles for the weekend. Fourth, my loving and very energetic future mother-in-law and her husband also dropped everything to drive up from LA for the weekend. As did Rudy’s lovely aunt and uncle. I was a little overwhelmed with the amount of folks who were willing to spend precious time and money to come up for our quickie ceremony. It was both touching and heartwarming. Little did I know the best surprise was yet to come.

Of course, focus next turned to what we would both wear. Neither of us had the time nor the desire to hunt down formal wedding attire. On our list of concerns, it was at the very bottom – we just aren’t those people. We both wanted something nice but casual, and comfortable. That was pretty much it. I pulled a little white summery dress out of my closet, and he found a pair of khaki dress slacks and a pale blue button down. Done. And damn if we didn’t look gooooood!

Fast forward a few days, and we were off to Vegas on an early Thursday morning. We dropped the pooch off at his favorite doggie day care in Vegas, and made it to the hotel. Everyone from out of town was arriving Friday or Saturday morning, so we had Thursday night to ourselves. We had some drinks, did some gambling, did some people watching, had a lovely dinner and generally just had a fantastic night. (Some details omitted to protect the innocent.)

The next day, we lazed about in bed and ordered room service and then napped some more. Late in the afternoon, Rudy told me I needed to get out of bed at some point. I knew he was right, but I still gave him a snarl. Then went back to sleep. Finally he couldn’t keep his secret to himself another second. He leaned over and told me we had to pick up my parents at the airport. I told him to stop being a jerk – he wasn’t funny. It took him a few minutes to convince me that he wasn’t joking. That my amazing, incredible, wonderful, sneaky parents had been plotting with him for days and were flying out for the wedding. From Ohio, on 3 days notice. I still don’t think I believed it until I saw them at the airport. After a few delays, they finally made it to Vegas (they spent more time traveling to and fro than they did in Vegas) and my heart was happy. Between the reality of them moving heaven and earth to be at our wedding and the simple fact that I hadn’t seen them since months before the cancer diagnosis, there were a lot of very long hugs and not a few tears at the airport that night.

As they were exhausted from a long day of travel, we dropped them off in their hotel room and let them get some rest. We zipped back to our hotel and met up with Rudy’s best friend, Kristen. I think. At this point, the weekend is a blur. Oops. But I’m fairly sure we had some drinks and gambled a bit with her before scooting off too bed entirely too late. All I know is that we had a lot of fun.

The next morning came entirely too quickly. We got ourselves all pretty and met up with Kris downstairs, then drove over to the chapel. My parents were waiting for us, having gotten there early enough to walk next door to the ‘Pawn Stars’ pawn shop and look around first. And no, they did not meet Chumley or any of the other dudes. By the time we got there, there was a line out the pawn shop door around the building, a DJ setting up in the parking lot, and a food tent getting set up. Apparently it’s quite the tourist destination now. Who knew? We had other things on our mind at the time, so we quickly got around to giving more hugs as more people showed up and started getting down to the business at hand.

And with that, I will leave you for tonight. But I’ll be back in a day or two to finish the tale of our wedding weekend. Honest. Typing this tale (oooooh kinda sorta alliteration!) has brightened my mood. I still want 2 particular people to be hit by a bus (ok, maybe two or three others as long as I’m wishing…), but at least I can still vaguely see a glimmer of hope for humanity again. And a glimmer is all I need for now.

And The Hits Just Keep On Coming…

So now that I’m feeling loads better, let’s get back to the story shall we? Last I left off on my recounting of this fabulous journey, I had just been informed via a static-y phone call that my last biopsy had found a tumor and that I officially had stage 1B1 adenocarcinoma of the cervix. Phone calls were made, tears were shed and much alcohol was consumed. And then…

I thought I had reached the end of the internet before – I was wrong. I googled and read every possible bit of information on my diagnosis. I read research papers, chat boards, textbooks, articles and studies. While waiting for my next appointment with my oncologist, I had to. I had to keep my mind from wandering off to places it shouldn’t go. (I’m a blonde – my brain wanders. A lot.) So I read and I learned. And what I learned was that I basically had 2 options: a radical hysterectomy and lymphadenectomy or a combo of radiation and chemo. Whee hoo! So being the wise chicky I am, I had already decided I would go the surgical route. Because the joy of radiation is that they can only treat an area once – so if I went the chemo/rad route and the cancer ever came back, I would be screwed. And really – who wants to do chemo/rad? No thanks. I like my hair. And being able to taste/eat food. And having bones that aren’t brittle. And having skin free of burns. And…the list goes on. Anyhoo…so fast forward a week to meeting with my groovy oncologist. Rudy and I were scared as hell, but oddly jovial. Nervous laughter was the theme of the day. I swear the poor office staff must have thought we were both insane what with all the giggling and inappropriate jokes while we waited for the doc to come in. Gallows humor is a hoot. You should try it.

After the initial hi/howyadoin’/handshakes with the doctor, I wanted to get right to it. I wanted to read with my own eyes the test results. Luckily my oncologist was already aware that I had a nasty habit of researching the hell out of everything, so I let him talk to Rudy while I scanned the test results. Scan scan scan…screeching halt. Wait, what? Adenosquamous carcinoma? What the hell? That’s TWO cancers at the same time! Adenocarcinoma and squamous cell carcinoma! Damn you static-y cell phone! Scan scan scan…screeching halt. Wait, what? Lymphovascular invasion? What the hell? That means the cancer is in the blood vessels that go to my lymph nodes! At that point, my brain shut down. It really did. The doctor, as expected, offered the choice of surgery or chemo/rad and explained the pros and cons of each. He recommended surgery and I agreed. There was apparently a lot more said during the appointment, and a lot of discussion of chemo/rad, but I don’t remember it. At all. According to Rudy, my brain conveniently blanked out each and every mention my doctor made of chemo/rad. To this day, I don’t remember discussing it at all other than him offering me the choice. But we apparently also discussed the possibility of me needing it after surgery depending on what they found or in the future if the cancer ever returned. Who knew? I’m still half convinced that Rudy’s just trying to trick me into thinking I’m losing my mind because I have zero recollection of it. Good times. What’s even better is that I read that pathology report 200 times in the next day or two, and every single time I missed another ‘wait, what?’ line. The brain really does a marvelous job of protecting us from things we aren’t quite ready for yet. The other biggie that I conveniently didn’t see (literally, the pathology report was in bullet format, about 10 lines – it wasn’t rocket science) was that my margins weren’t clear. Meaning when they took the ginormous biopsy, the cancerous cells went all the way to the edge. Bad juju.

So after a very surreal appointment with my fabulous oncologist (who really, really does look and sound like the long-haired blonde dude from Die Hard), we headed over to do up the paperwork for my surgery. Luckily they had just done all the pre-surgery lab work for that pesky biopsy, so I only had to re-do a few blood tests. But since this next one was such a major surgery, I had to have my military doctor do a physical and certify that I was healthy enough to undergo the surgery. Huh. That was new. I’ve had a few surgeries requiring general anesthesia in my almost 20 years in the military, and not once did I ever need a physical to certify I would live through a surgery. Odd. (And yes, this is totally out of order time-line wise, but my on-base physical provided me with some seriously morbid giggles. Perky young airman checking me in – ‘So, have you had any health issues since you were last seen here?’ Me – ‘You mean besides the cancer?’ Perky young airman – horrified stare and stammering apology. Me – *snicker*) Ok, back to the story. Paperwork. Scheduling surgery. So there was no debate, no ‘what works for you.’ I had already been scheduled for surgery. 9 August 2012. I signed some paperwork, read that I had to be at the hospital at 4:45am (WHAT?!?!) and that I couldn’t eat solid food the day prior, and nothing after midnight the day of. Awesome. At this point I didn’t care about the surgery. What I cared about was that I was going to be one starving, caffeine-deprived, raging bitch. (Looking back, that might be the worst part of this entire journey – the amount of tests and surgeries that I had to have that required me to starve/dehydrate myself for extended periods of time. Are these people not aware that at a bare minimum I need caffeine to survive?!?!?) So I signed my life away to UCLA Medical Center and we went on our merry little way.

I think we were a little more subdued after that. The jokes were done, the smartassery was done. Suddenly having the piece of paper that officially spelled out what was wrong with me made everything 100 times more real. I couldn’t stop reading it, as if the words would change if I looked at it hard enough. We had a quiet little lunch that quickly got back to normal as we fell into our old routine of mocking the doctors and students as they hurried by. (Yeah, yeah, we’re horrible people. We know. It’s really why we get along so well and are so perfect for each other.) I honestly don’t remember the rest of the day. We could have gone to the beach or we could have gone straight home. All I remember is both dreading and desperately needing to call home and tell my mom and dad AGAIN that things were worse than we thought. I was tired of making my mom cry, but I needed to talk to her and my dad and have them tell me that it would all be fine. And they did. Because they’re amazing. And wonderful. And always there for me.

So the phone calls were made, e-mails sent and all was quiet in Samantha and Rudy world for the night. We had a few drinks, we talked, we cried, we held each other. Mostly we reassured each other that I would be fine. And he reassured me that he would take care of me no matter what. But that he would kick my ass if I didn’t come out of this ok. He so gets me. I think that night was when we started discussing the idea of one last ‘whoo hoo!’ trip to Vegas before my surgery. Knowing that I was going to be laid up for weeks and potentially could take months to get back up to feeling human, we thought it might be a good idea to have one last fling and forget about the cancer for a few days. It was also kind of nice to have something to look forward to other than having my innards ripped out. And as we talked about Vegas over the next few days, there was of course the natural progression to discussing the other thing that Vegas is known for besides gambling. That’s right kids…weddings!

 

 

My New Normal

“I can’t seem to find my new normal.” I read that a lot on a few cancer chat-boards that I frequent and I can’t get it out of my head. You see, there seems to be an assumption that after treatment/surgery and the ‘all-clear,’ that I should be dancing a jig to be cancer-free and that everything should just fall right back into place. News flash – I’m not and it doesn’t. Some people in my life sort of get it, and some have no idea – and the rest fall somewhere in the middle.

New reality #1 – I’m only kinda sorta cancer-free. Yes, the surgery technically got it all. But the kicker is I’m not officially cancer-free for 5 more years. I have 5 more years of constantly looking over my shoulder waiting to see if this bastard is coming back. 5 more years of worrying about every ache and twinge. 5 more years of getting poked, prodded, scanned and checked out every few months, and then waiting anxiously for each appointment and test result. Because the reality is, the rare bastard of cancers that I got has about a 35% chance of coming back in the near future – and if it does, it comes back much bigger and badder than before. If it comes back, I will definitely need radiation and chemo, and will most likely lose some more body parts that I’m kind of fond of. So yep – while I’m currently NED (No Evidence of Disease), I’ve still got a long road ahead of me before I can really and truly celebrate. So for now, I am still trying to find the right amount of happy dance to do to that will allow me to celebrate, and yet keep the cancer-gods from smiting me for celebrating too soon.

New reality #2 – I’ve had to re-evaluate a lot of people in my life – and what I found surprised me. I get it – people (myself included) normally just aren’t sure what to say or do when someone they know gets bad news. There’s a lot of ‘let me know if you need anything’ and ‘I’ll be praying for you’ type stuff – and that is perfectly fine. What surprised me was the complete randomness of responses from people I thought I knew, and people I’ve still never met. I had friends I’ve known for a long, long time just kind of bow out after an initial ‘hope everything works out’ – and that sucks. I’m still trying to wrap my head around a few of those. I had friends tell me that all that matters is that I’m alive – which by the way, is right up there with ‘it could be worse!’ (Rant following…Having a friend brush off how you feel is kind of shitty. By that ridiculous logic, any random person spending time say…recovering in a burn unit in a hospital after just having lost their entire family in a horrible fire should just be told to suck it up, brush off the pain and mental distress and par-tay, because hey – they’re alive! Whee hoo! Annnnnd end rant.) So yeah – if you’ve never heard the words ‘you have cancer’ said directly to you, even if you mean well, you just don’t get it. You don’t. And you can’t. Which is ok. It happens. Which brings me to my next friend experience – I have a new wonderful friend who I met on-line who is practically a twin to me. (Hi Frodo! Miss you!) And we still haven’t met face to face. She and I had the exact same rare cancers at the exact same time and seem to have a freakishly large amount of things in common. Ridiculously, freakishly large. Books, tv shows, comic strips, movies, sense of humor, all of it. As a joke I asked her what kind of OJ she drinks – turns out, the exact same one as me. Freakish, I tell you. And if it weren’t for this cancer crap, we never would have gotten to bounce catheter jokes off of each other – and that would be a shame. Another good thing – I had friends that I haven’t talked to in years come out of the woodwork and offer so much love and support that it’s amazing. And then some of my friends and most of my family responded exactly as I thought/hoped they would. Because they’re totally awesome. So yep – I learned that some of my friends suck, and most of them are awesome. It just kind of shook things up learning which was which.

New reality #3 –  7 weeks after surgery, I am still a potato. Oh sorry – a pet rock – because a potato serves a purpose. When I was awaiting my surgery date, my lovely new friend was just going through her surgery. And she suddenly became much less witty. I had to use small words when I e-mailed. I had to explain jokes. It was like her brain had decided to drop to 50% capacity. Hmmm. She told me to just wait – it would happen to me. And then she planned on mocking me relentlessly. Sure, I said. Not gonna happen. Except it did. When I first got home, I blamed it on the pain meds. Then lack of sleep. 7 weeks post-surgery, I don’t have anything to blame it on. I forget words. A lot. I stare at walls. A lot. I mix up words when I talk. A lot. I forget stuff. A lot. And I’ve just discovered I’m not completely mental. It’s called postoperative cognitive dysfunction – and it’s fairly common after the type of major surgery I had. It has to do with the levels of and length of time you’re under anesthesia. And I’ve just learned it can last for months. Possibly years. Yay me! I’m keeping my fingers crossed that it goes away soon, because it’s getting ridiculous. Ah well, at least I provide entertainment value occasionally. Like tonight, when I almost tossed the used coffee filter full of grinds into the dishwasher instead of the trash can. Good times.

New reality #4 – Constant pain and/or discomfort really, really sucks. Nothing terribly amusing or clever to add to this one. I just wish someone would have explained all the potential owies I would have after this surgery. Doctors everywhere are touting the wonders of this magical machine that is the Da Vinci robot used for my surgery. Even my surgeon happily explained that I would be up and about in 2 weeks and all better in 4 weeks. Testimonials on-line from women gleefully exclaim that they experienced zero pain after surgery and were back to work in 5 days. (Seriously. These are apparently the same women who in olden days would deliver a baby while working in the fields and just keep going.) Well apparently whatever magical little fairy that was supposed to swing by and sprinkle her ‘pain-free/fast recovery’ fairy dust all over the robot used on me, forgot. Because 7 weeks out, I’m still in pain and still tired. Which led me to do a little research. Surprise, surprise, it appears I’m not alone in the least. Most women who have the same surgery I had get a minimum of 6 weeks off work – most get 8. I initially got 4 weeks off and had to beg for 5. (Thankfully, I have an awesome boss who is letting me work what hours I can. He gets it.) Did going back to work too soon slow down my recovery? Who knows. But it sure didn’t help, I know that. The reality is that even with the magical robot machine, the surgery is what it is – a major surgery that takes women a year to fully recover from. The removal of several organs and loads of connective and soft tissue, the stripping of arteries, veins and nerves, the severing of some of those same arteries, veins and nerves, the ‘we’ll just move this over here while we work on that’ jostling of the innards, the hunt for and removal of 20-ish lymph nodes and oh yeah, the hundreds of internal, and some external, stitches isn’t a freaking walk in the park. There’s no getting around that, no matter how modern and snazzy the shiny new machine is. And I kind of wish doctors acknowledged that.

New reality #5 – Permanent health issues that no one warns you about really freaking suck…and the psychological ramifications of the shit you already know about suck even worse. Remember that nerve-severing I mentioned before? And the lymph node removal? Oddly enough, no one warns you about the permanent effects of that. I take that back – I was warned about the nerve they had to cut that went to my bladder. It just gets in the way of where they need to work, apparently. Luckily, that issue is vaguely kind of sort of fixed. But they don’t warn you that in order to find those pesky lymph nodes, they have to basically sift through a lot of stuff. And then strip down various nerves, tendons, arteries and veins to get to them. Which tends to up the chance of nerve damage, wouldn’t you say? I would, because I now have nerve damage in one leg and one arm. Permanent? Who knows. After much poking and prodding and visits from lots and lots of neurologists while I was at the hospital, I was told I *should* be better after 2 weeks, but there was a remote possibility it was permanent. Well, it’s been more than 2 weeks, so guess which way I’m leaning? *sigh* And if the shooting pains in my arm/hand and leg weren’t enough added fun, I have more to look forward to. Lymphedema, anyone? Who knew – if you remove lymph nodes, you stand a very good chance of screwing up the snazzy little lymphatic highway that runs through your body. Something to do with fluids not draining properly, increased risk of permanent damage and pain if not treated immediately, having a much higher risk of infection in the affected limb blah blah blah. I say blah blah blah because it takes a while to really kick in – usually a year or two after surgery. And I’m too damned tired to worry about yet another random health issue. Because I’m already emotionally exhausted with all the crap I already knew about. The no having kids part, the 5-years of checkups, the long recovery, the absolute emotional roller coaster that is a cancer diagnosis – I really did know all about all of that. And yet it’s still surprising to me the toll it takes. Every. Single. Day. It’s all more mentally exhausting than I ever dreamed.

New reality #6 – The apparently compulsory pervasive perkiness of cancer survivors makes me feel guilty for having bad days. It’s almost as if I’m supposed to suddenly be a better person – one who is cheerfully grateful every single second for every breath, every dawn, every moment and have a damn halo over my head while I’m at it. I’m supposed to re-evaluate everything and discover a new-found generosity of spirit, a wiseness, a battle-hardened survivor-type attitude where I’m above the day-to-day nonsense. Yeah. I’m not. I’m different – I don’t know how yet, but I am. I know that. But most days I just pray for the pain to stop and for the cancer to stay away, and hope that today is a good day where I don’t need to go to bed after 4 or 5 hours of work – which entails sitting at a desk. But I feel like even on a bad day, I should have that weary, good-natured, happy to be here attitude – all the while curled up with teddy bears with little pink ribbons tied on them. Guess what kids – cancer and recovery isn’t always rainbows, unicorns and kittens. Sometimes folks with cancer have really shitty days. And I’ve decided that I’m not feeling guilty about it any more. When you stop to think about it, it’s better this way anyway – hiding your feelings/fears/hurts is ridiculously dumb. And counter-productive. So suck it, rainbows and unicorns! We can’t all be warrior princesses every single day no matter how hard we try.

So what does all this rambling mean? (And by the way, it’s taken almost 4 days for me to type this little blog entry – thank you postoperative cognitive dysfunction!) I’m not sure entirely. It means I’m still needing to take things one day at a time and that I’m still sorting some things out and I’m still recovering. A few weeks ago I just needed a break – I needed to retreat and curl up in my own mind and think some things through. I’m still pondering and still not completely ready to step back into the real world yet. But I’m getting there. Slowly. So don’t you worry faithful readers – all 5 of you – I’ll get back to writing the rest of my story soon. As long as I don’t forget my log-in. Or password. Or blog name. Or my own name. Or where my computer is. Or…

It’s Not a Toomah – Oh Wait…Yes It Is.

2 July 2012 – the start of my ‘real’ cancer journey. The rest was just tests and more tests that were all supposed to come back just fine. Except they didn’t. Which is why I had to have a cold-knife cone biopsy on 2 July, somehow still hoping it would just confirm the results from prior tests, while convinced it would come back with more bad news just like my other tests.

We arrived at UCLA at around 11:00 in the morning for my 1:30pm surgery. I was close to bludgeoning someone to death and swiping the coffee out of their cold, dead hands. Normally I wouldn’t do something like that (honest!), but on this day I had been directed to neither eat nor drink anything after midnight the day prior. Some medical mumbo-jumbo about general anesthesia and choking and dying or something. (Actually, the chief anesthesiologist stopped by later and explained it all for a good 45 minutes, but I prefer ‘mumbo-jumbo’.) Sure I was hungry, but all those darned students and doctors strolling around with their Starbucks cups and travel mugs…that was the worst. So we headed upstairs to check in. Did I say lack of caffeine was the worst? I was wrong. There was a man there waiting for surgery as well, and he had brought his wife and their 2 lovely screaming toddlers. Normally, no biggie. Add in stress, hunger and lack of caffeine, and I was soon entertaining thoughts of punting those children off the roof. Or at the very least introducing them to duct tape. Thankfully, they were called back before me, and peace reigned in the waiting room.

A while later, my name was finally called. Whee hoo! But instead of being led off to my hospital bed and happy drugs in an IV, we were shown to…another waiting room. Apparently there are stages of waiting. Or something. At least this one had…coffee. Bastards. Not sure where they took the squalling kids off too, but they weren’t in this waiting room. Thank goodness. Another little bit later, and my name was called. Finally! I go back, get in to my oh-so-sexy hospital gown and hop into bed. Let’s get this show on the road! I met nurses, anesthesiologists, other doctors and a whole host of folks. They got my IV in after a few painfully awful tries, and I was ready to go. Then the nurse comes back and tells me my doctor is stuck in surgery across the street. 30 minutes, tops. 30 minutes later…still stuck. And they wouldn’t start my happy drugs in the IV until he was on his way. None of these people knew the danger they were in of me going in to full-on zombie mode and gnawing on the nearest limb out of hunger. Luckily, my surgeon finally finished his other surgery, and the happy drugs were started. And that’s all I remember. Somewhere in there, I recall warm blankets, but that’s really it.

Fast forward an hour or so later, and I woke up. Pain wasn’t too bad – mostly like bad cramps. The nurse offered me some oxycontin for the pain and me, being a dumbass, said no. It really wasn’t that bad though. They let me lounge around in bed for a while until I talked to all the doctors and whatnot and felt closer to normal, then it was time to head home. Still felt ok – starving, but ok – so we decided to stop for a late lunch. Mainly because Rudy didn’t want me to eat the flesh off his arm. He was highly amused that out of all the places in LA to eat, I wanted Denny’s. What can I say? Comfort food sounded good! And that was the best darn Moons Over My Hammy I’ve ever eaten. And surprise, this Denny’s has happy hour every day from about 3:00 to 5:00pm (or something like that…) where you get 50% off your bill. Score! Then we had a long drive home, a few days of feeling tired (mostly from the anesthesia) and a week or two of cramps and I was as good as new. Well, maybe not new – let’s go with good as certified pre-owned.

So then we waited. The surgeon told me the results would be back in one week. Seven short days. One week has never felt so incredibly long. I was remarkably patient for approximately 168 hours – then I called his office. After fighting through the world’s longest prompt menu (Press 1 for Dr. XYZ, Dr. ABC and Dr. KLM. Press 2 for Dr. …..) I think it listed about 50 doctors. Finally – hallelujah! – a human voice. The human voice I would hear a few more times in the coming days, and who was very sweet and patient with me. I asked if my results were in, and after a few moments on hold, I got the dreaded, ‘not yet. Sorry, hun.’ She then was kind enough to give me her direct line so I could skip the menu next time. I gave her fair warning that she would hear from me every single day until my results were in. She just laughed and said she understood. When I called the next day, same thing. No results. It was around day 7 that I started really losing my mind and imagining the worst. When day 8 hit, I was convinced of the worst – why else would it be taking so long! Day 9 – same thing. But this time, my lovely lady on the other end of the phone said the magic words, ‘You shouldn’t be waiting this long. Let me send a note to the doctor and the lab and see what’s going on.’ I thanked her and told her I’d talk to her tomorrow.

I never did talk to her tomorrow. I went home after work, had dinner, made a drink and sat down to watch some mindless tv. Family Guy, I believe. Then I glanced over at my phone and saw a missed call. Huh. Don’t know anyone from that city…oh hell. It’s an LA area code. I should check that. Sure enough, it was my surgeon calling me from home at about 6:08pm. And yes, I remember the time. I called him back and of course, his cell phone sounded like nothing but wind and static and crap. Somehow amongst all that I heard ‘tumor.’ And my heart dropped. I stayed calm while I fought to ask questions and understand his answers through the terrible cell connection. And what I heard was that my adenocarcinoma in-situ was now officially ‘real’ cancer – they had found a tumor in the endocervix – stage 1B1 cancer. He told me he wanted to see me in his office to discuss treatment options, and we were able to get an appointment with him one week later. I spent the rest of the evening calling immediate family and e-mailing close friends. I didn’t have the energy to do more than that. Other than that, I made a few more drinks and my man and I spent the evening taking turns crying on each others’ shoulders. But in all honesty, I cried a little less. That’s the upside to being a bit pessimistic – I was already expecting the results.

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.

Who knew LA had friendly people?

Well, I’m back. This is my first blog post after surgery last week. I’m currently on opiate-based narcotics (and various other drugs) and have the attention span of a gnat (ok, probably not even that long – more like the attention span of a gnat with ADHD), so bear with me. I promise to try to stay awake long enough to finish this blog if you all promise to bear with my ramblings and not mock me too terribly much.

When I last left you, faithful readers, I had been diagnosed with adenocarcinoma in-situ of the cervix and endocervix. For someone who has had normal chick exams her entire life, it was a terrifying diagnosis that would require at least a total hysterectomy to treat. But I got ridiculously lucky (and yes, I still consider myself lucky) in that we found this early and was confident things would go smoothly.

I had a follow-up appointment with the doctor who did the biopsies the day after he called me with the results. Nothing he told me surprised me – he recommended a total hysterectomy (removal of the cervix and uterus) as treatment. He said he could do it, or if I preferred, I could transfer to a gynecologic oncologist. I asked which he recommended, and he recommended I transfer for the simple reason that if after the surgery they found something worse than the adenocarcinoma in-situ, the oncologist would already know my history and be able to deal with things easier. Well, that and gynecologic oncologists are experts in this kind of thing. So I thanked him for his time and told him I would transfer. Last I saw of him, and it’s a good thing.

So with all of this being my first real foray into the world of TriCare (military health care) and off-base doctors in my 19+ years in the Air Force, I wasn’t sure what needed to happen next. I went straight to the source and swung by the TriCare office on base and figured I’d ask the experts. They informed me that now that I’d been seen off-base, I would stay off-base for treatment. The last doctor to see me would need to input a referral for me – it was out of their hands. Well crap. So I called my doctor’s office back and let them know. I figured it would be a week before I saw anything show up on the TriCare website, but no! I was pleasantly surprised to discover he had put in a transfer request for me in less than 3 hours. Whee hoo! Then I googled the name of the doctor he was trying to transfer to me. *sighs and beats head on desk* The woman he wanted me to see used to be a gyn/onc. Then she moved to California and dedicated her life to delivering babies and making big bucks. Why is she still listed as a gyn/onc with TriCare? Beats me. But I figured I’d meet with her and give her a shot. Orrrrrr not.

For probably the first time in recorded history, a health insurance company actually did a good thing. On their own, through no prompting by me, instead of approving the transfer to the new doctor, they replaced that doctor with a gyn/onc at UCLA. And holy crap is he good. And holy crap is UCLA good. #1 hospital on the west coast and in the top 5 best hospitals in the country consistently. I started googling my new doctor and was really, really impressed. Multiple published research papers on different gynecologic cancers, tons of awards for his research and academics, multiple fellowships, including one at Cedars-Sinai and a whole ton of other things that made me go ‘WOW!’ You have no idea how excited I was to have a doctor that might actually know what he was doing.

As luck would have it, I was able to get an appointment with him about a week after TriCare approved him. We were so excited to get my treatment started that Rudy and I drove to LA the night before so we wouldn’t get delayed by morning rush hour traffic on the way to the appointment. While that sounded like a great idea at the time, it turned out to be a really, really crappy choice. Long story short, a few miles from the hotel we got hit from behind on the highway as we were driving about 65 mph, minding our own business in the middle lane. After spinning (actually I prefer the words caroming and careening but I wasn’t sure I could pick just one) across the highway and bouncing off some stuff, my car was totaled. Totally what a girl needs when she’s prepping to meet with her oncologist for the first time, right? *sigh* But thanks to our wonderful LA family (hi Ricky and Linda!), we took care of everything with the towing company and finally made it to our hotel. Was drinking heavily that night the wisest choice of ways to deal with all the stress? Probably not, but I don’t know that anyone is quite in the position to judge me. So there. And it worked – I felt much better.

Luckily, the hotel we were staying at was only a mile from the hospital so it was a cheap cab ride. We got there a little early and immediately noticed how amazingly nice everyone was! Neither of us could believe that all these friendly people actually existed in LA. It was just the start of an all-around great experience with UCLA. After filling out much paperwork (I may or may not have agreed somewhere in that paperwork to give them my first-born child – little do they realize I’m having my lady parts removed…suckers!), I was finally called back to meet my new favorite doctor. Smart, funny, kind AND with a German accent. Awesome. My husband immediately had a man-crush on him. I figured me having a crush on him wouldn’t be the best idea considering as much time as he was going to be spending looking at my lady parts, so he was all Rudy’s. *snicker*

After much talking, question answering, lots of picture drawing and a quick exam, he laid out the options. Well, actually option – singular. Instead of jumping straight to a total hysterectomy, he wanted to do yet another biopsy first. His rationale was if he did a total hysterectomy, and found more extensive or advanced cancer when they biopsied those tissues, then he would have to go back in and do another major surgery right away. No fun. But if he did the biopsy first and found out how far the cancer had progressed, he would only have to do one surgery. While at that point I just wanted those pesky cancer cells out of me, I could see his point. One major surgery is plenty for me, thanks. So we scheduled the next biopsy, a cold-knife cone biopsy (CKC), for the following week. A CKC is done under general anesthesia as an out-patient surgery. Basically, the surgeon uses a scalpel to cut out a cone-shaped piece of the cervix. When that is analyzed in the lab, it gives the doctor a much more precise picture of how much or little the cancer has invaded the rest of the cervix since it doesn’t just take a tiny sample off of the surface. This is the best way to biopsy tissue that has been diagnosed with adenocarcinoma in-situ – there are other methods, but this is the only one that allows the doctor to see if the edges of the sample he takes are cancer-free or if it goes all the way to the edges. If it goes all the way to the edges, that’s a bad sign – it means the cancer has spread more than expected. A lot of the time a CKC will remove all of the cancerous cells, but since the adenocarcinomas like to skip over healthy cells and show up randomly, there’s no way to be 100% sure other than to do a hysterectomy. So the CKC is essentially for ‘staging’ the cancer and lets the surgeon determine the best treatment plan possible.

After meeting with my doc, we got the CKC scheduled, met with his admin folks for more paperwork, then headed down to the lab to do a ton of pre-surgery lab work. All that was left to do after that was wait until the following week for the surgery. And then wait for the results. And then wait some more. Have I mentioned that the waiting in all of this was the worst part? Oh, I have? Ok. Just wanted to make sure. Now you get to wait as well – I’m falling asleep as I type and my brain is starting to shut down. Until next time, kids.

Coming soon to a blog near you – my first minor surgery, the agonizing wait and the crushing results. And probably lots more rambling. Lots more. 

Vegas, baby!

80 to 90% – that’s my 5 year survival rate. Sure, those odds sound awesome when you’re in Vegas. Hell yeah! Put $500 on black! Pull that slot machine! But when it’s your survival odds – they don’t sound so awesome.

Sure, the odds could be worse. And I could get hit by a dementia-suffering dude while driving on the highway which always has the potential to make my 1-day survival rate approximately zero. But still. They could be a hell of a lot better. Especially when coupled with a 35% chance of recurrence in the next year. I’m not so jazzed about that either. But honestly, at this point (2 days before surgery) I’m feeling pretty damn good. Call it acceptance, call it denial, hell, call it Shirley if you want – but I’m good. Really. I got this. I’ve come to terms with all the possibilities – all clear on Thursday, bad news on Thursday and I need chemo and radiation, and the possibility that I’ll have to wrestle with this ugly beast again in the not so distant future. I think it’s because I know no matter what happens, I will not be in that 10-20%. Not. Going. To. Happen. I know that. And knowing, boys and girls, is half the battle.

Apologies for the long delay between posts for the 2 or 3 people that are bothering to read. Been a little busy what with the running off to Vegas to get married, and spending time with my wonderful mom who flew out to visit/help out after surgery. Kinda been busy living and whatnot. So when last I left, I had been referred to a new doc who seemed to know his stuff. Mostly. We went ahead and scheduled a colposcopy (coating the cervix in an acetic acid to highlight abnormalities, then using a magnifying machine to examine it), an endocervical biopsy (ECC) and an endometrial biopsy. Me being a smart chicky, went ahead and did some research on those. Let’s just say that if you believe everything you read on-line, an endometrial biopsy causes agonizing pain equivalent of Nazi medical experiments. (If you’re offended by that, then you should read more stories from women on how their doctors treat them. Seriously.) While I wasn’t looking forward to the tests, I found myself wanting the date to hurry up and arrive so I could figure out what in the world was brewing in my lady parts.

Biopsy day. Light breakfast followed by lots and lots of motrin. And then one more motrin for good measure when I got to the doctor’s office. Just wanted to be prepared for getting carved up. Whee hoo. He strolls in to the room to chat and go over the procedures, and only mentions 2 of the biopsies – the one he doesn’t mention is THE test for my test results – the ECC. Hmmm. I remind him that we need to do the ECC as well. He hems and haws and I finally put my foot down and demand it. He had to tell the nurse to prepare one more specimen jar. Seriously? He wasn’t going to do one of the mandated freaking biopsies for my test results. Guess he wasn’t an expert on my test results after all. Shocking. Ok doc, let’s get going and get this over with.

Now before I start this next section, in my defense, I was hopped up on a large amount of motrin, adrenaline, stress and fear. It wasn’t until afterwards that I realized that my doc was a bigger moron than previously thought. So cue biopsies. Cervical biopsy – ow. That kind of pinched. Ok. Endometrial biopsy – OH. DEAR. GOD! This should never be done to women without massive amounts of drugs. Sure, it was over in about 30 seconds, but seriously. Do something that causes that much pain to any random dude and it would immediately be a medical standard to prescribe oxycontin and xanax beforehand. But womenfolk? Nah – suck it up. (All the old male doctors that make the rules have decided that this doesn’t hurt and doesn’t require painkillers. Bullshit.) And last but not least, the ECC – owie. More owie than the cervical biopsy, less owie than the endometrial biopsy. But it took a lot longer, and at that point, I wanted to go curl up with a heating pad, more drugs and large amounts of bourbon. Finally finished with the biopsies, the doctor proceeds to look at the floor and tell me the results would be back in a week or so. Then he proceeds to practically bolt from the room. Me finally being a smart-ish chicky, ask him how things looked – because had he done the procedure properly, he would have seen any abnormalities. He mumbles something about seeing a fibroid tumor, and THEN bolts out of the room. Hmmm. Odd. Now on to why I now think he’s a moron – remember that biopsy that involved an acid wash and a big machine to closely examine abnormal cells? Yeah. He didn’t do the wash. He didn’t use the big machine. He just randomly took a biopsy. Idiot. I’m still furious about it now – how many women has he missed pre-cancers or cancers on because he didn’t bother to do the test properly? And yes, I will be having a little chat with my insurance company about him. It’s just not exactly on the top of my priority list right now. But I will get to it. Honest.

So tests done – now the wait. The wait is the worst part of all of this. I don’t care what diagnosis you get – the wait sucks. Your imagination can have all kinds of fun tormenting you in all the copious amounts of spare time you have wondering what the doc will say. And yes, you can try to keep yourself busy and have people tell you not to worry since worrying won’t change anything and to try not to think about it. Bullshit. You will think about it. And even when you don’t want to think about it, your subconscious will be having a field day. Trust me on this. Thankfully, I only had a week to worry – and the worrying wasn’t really too bad this time. It was my first abnormal pap ever, after all. I assumed it was some abnormal cells that they could just remove, or worst case a few pre-cancerous cells that would require a little more in-depth removal, but still fairly easy. Piece of cake.

What I wasn’t prepared for was for my phone to ring a week later at 7:00am. Who the hell calls someone at 7:00am?!?! Oh. This one thing the doctor did right. He called me literally as soon as he got my results. Endometrial biopsy – clear. (Yay!) Cervical biopsy – carcinoma suggestive of endocervical adenocarcinoma in-situ, micro-invasion cannot be ruled out. ECC – adenocarcinoma in-situ. Shit. My brain heard ‘carcinoma’ and whispered ‘cancer’ for the first time. Needless to say, I was too numb to ask any questions. I thanked him and immediately went and curled up in bed with my man who got the pleasure of waking up to me crying on his chest telling him it was cancer. Awesome.

After much, much time spent on google, I learned that adenocarcinoma in-situ is kind of a pseudo-cancer. It’s cancerous cells, but they haven’t really spread anywhere – they’re localized on the surface mostly. Some doctors don’t even consider it a ‘real’ cancer – it’s a shadowy thing that is somewhere in between a severe pre-cancer and cancer. So that was ok. But the crappy part is that even with adenocarcinoma in-situ, a hysterectomy is the standard of practice for treatment. Oh, and the other crappy part is the fact that it’s aggressive, fairly uncommon and likes to skip over healthy cells by traveling through the glands to pop up wherever the hell it feels like it. It has no standard pattern of growth or spread. So drastic measures are always taken when it rears its ugly head.

As much as learning that sucked, I would give my left arm (not my right one – I need that) to go back to just being diagnosed with adenocarcinoma in-situ. Looking back, it seems like such a cute, cuddly little thing. Yup – universe still not done screwing with me yet. But luckily, the universe (and TriCare) eventually got one thing right – my next doctor.

2 days until surgery. 2 days until hopefully hearing that I’m cancer-free for now. 2 years of checkups every 3 months, 3 years of checkups every 6 months. After that, I’ll officially be cancer-free. I can’t wait to see 2017. It’s going to be fan-freaking-tastic.

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.