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!

 

 

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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…