Almost 7 Months Later…

So here it is – almost 7 months after my radical hysterectomy and lymphadenectomy for stage 1B1 adenosquamous carcinoma, and 4 days after my last itty-bitty-clean-things-up-and-do-another-ginormous-biopsy surgery. And I’m still here. Fuck you, cancer. And yes, I’ll get back to telling my story soon. Just wanted to post an update for you kids and to let folks know that it gets better.

This isn’t a long, story-telling blog post. Like I said, just an update to let everyone know I’m still alive and kicking. And I’m doing better than I have in a long, long time. Maybe it’s the upcoming 40th birthday looming in the not-so-distant future that’s motivating me, or maybe it’s the fact that I’m finally not in pain every damn day, but I’m finally feeling really good, and working out again so I can be even more awesome than usual for my birthday.

Don’t get me wrong – I still have pains that I can’t quite figure out and that my oncologist wants to take happy snaps of (CT scans for those of you who can’t translate my dork-speak), and I still have moments where I get angry or emotional over stupid shit. Example – for my surgery on Thursday, which was at the same UCLA where all of my treatments and surgeries have taken place, I was asked twice to provide a urine sample. I knew exactly why both times, and both times I was kind of a bitch about asking what they needed it for. In my not-able-to-have-kids-due-to-cancer-and-having-my-uterus-removed-by-you-people mentality, they should have made the minor effort required to glance at the computer screen and realize why I’m there. And to perhaps not ask me to take a pregnancy test. We women-folk who have had that option taken away from us tend to get a little touchy about things like that. Or so I hear.

So yeah. Occasionally I get a little cranky over silly things like not being able to have kids (which wasn’t even really in my plans anyway). And occasionally I get to thoroughly enjoy a good workout (first time for everything, right?). And occasionally I still get emotional over people I barely know on-line who find themselves right where I was 8 months ago. And occasionally I freak out about every little ache and pain and am convinced my world-class doctors are idiots. And occasionally I remember that I am truly blessed to have received the medical care I did and to have kicked this beast’s ass. And occasionally (ok, maybe more than occasionally) I remember that the fight isn’t over yet. But I always remember how very, very lucky I am to still be here. And no matter what is happening in my life, I still laugh at least once a day. And as long as I’m still laughing, I’m still living – and living well. And I think that’s all anyone could ever hope for.

I swear, I’ll catch everyone up on the story soon. Honest. Feel free to blame my latest surgery, Christmas, New Years, President’s Day, MLK Jr Day, winter superstorms, the flu, sequestration, the giant meteor over Russia, drone attacks, the Blade Runner murder, North Korea’s nuclear test (or Dennis Rodman’s visit), the pope’s resignation or Lindsey Lohan’s everything on why it’s taken so long for the latest update. Just don’t blame it on me. Because it’s my blog, dammit. And I’ll get there when I get there. But it’ll be soon. I promise.

A Candid Conversation Part 2

Here is the second part of an in depth conversation I had with The Gorgeous Blonde just before her hysterectomy.

In the interest of full disclosure, I am breaking it up into bite size pieces for my own sanity. I didn’t expect it to be as emotionally challenging for me to sit through during the editing process as it has been.

This time she talks about the importance of second opinions, a friend in Canada and throwing a party in her vagina.

Enjoy.

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

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.

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.

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.