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 Рmy 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.

A First Time For Everything

So apparently I have a blog. It’s my first ever, so please bear with me. Since obviously everything on the interwebz is true, I’ll start with saying I don’t have cancer and I just won the lottery for $200 million. What? You mean everything on the interwebz isn’t true? Dammit. So I guess I do have cancer and I didn’t win the lottery. Well, hell.

So it’s been a tough couple of months. For those of you who don’t know me, I’m an Air Force chick – have been for going on 20 years. I had a 9-month deployment with the Army to Iraq in 2006-2007, then a year-long deployment to Qatar in 2009-2010. I moved to a new base in early 2011, and thought I might be safe from deploying for a while. Wrong. In February 2012, I got notified that I was headed off to Afghanistan for 6 months. Boo. But as I had just had minor surgery on my foot, everyone assumed I wouldn’t go since I was still recovering. Then we did the math and realized my ‘no running, walking etc’ medical profile ended the exact day I was supposed to leave for combat training. So preparations began for my deployment. I wasn’t looking forward to it – I had never wanted to deploy to Afghanistan, and generally had a bad feeling about it. But I talked myself into looking at the bright side – it possibly would be my last deployment before retiring, I’d make a boatload of extra money, I’d get some snazzy new uniforms and toys, and I’d get to see a country I’d only ever seen from the air. No problem. Let’s get this show on the road.

Now when you’re out-processing for deployments, you have a lot of checklist items to go through – basically you see every possible agency on base, even if you’ve never heard of them, and have them clear you for deployment. I regularly contemplated throat-punching people that I dealt with who repeatedly told me, “you’re so lucky! I’ve been in for XX years and can’t deploy because my career field doesn’t!” Yeah, that’s helpful. Jerks. But I soldiered on (get it? Soldiered? Yeah, I’m a moron) and continued to spend my days driving all over base looking for obscure offices and sneakily hidden buildings to have people look at my checklist and spend exactly 0.8 seconds initialing a little box.

In April, I had an appointment to see the doctor on base to get medically cleared. He saw no problems, but I needed to do one little thing. The new commander for the area I was going to had laid down the law – all females coming over needed to have a current pap smear on record, whether they needed it or not. For those of you who don’t know, chicks get (or I should say are supposed to get) a pap smear every year, until they have 3 years of normal tests. My last one had been a year prior, and I wasn’t due for 2 more years. I griped about it to the doc, because let’s face it – having random folks poking around your lady bits just isn’t fun – unless you’re a complete freak. Even my doctor told me he didn’t agree with it. He thought it was a waste of time and resources, but that he had to schedule it for me or he’d get his butt chewed. Probably figuratively, not literally – unless the base clinic is a more bizarre place to work than previously imagined. So I scheduled it, had the test and continued on my merry way with out-processing.

4 days before I was supposed to leave for training, I swung by the hospital after qualifying on the 9mm (handgun training, for you non-shooting hippies out there). Enough time had passed that my test results should have been back, so I just needed someone to sign off on my checklist. I figured someone would just pull up my records and sign my form – in and out, right? Wrong. I sat in that waiting room from about 2:15pm until 4:10pm getting more and more pissed off. Didn’t they realize I was leaving soon? Why couldn’t someone just sign my damn form? Finally, a little airman came out and told me the doctor had time to see me now. I may have snarled back that I didn’t need to see her, I just needed to get a piece of paper signed, but I can’t quite recall. So then I sat in the doctor’s office for another 15 minutes, getting crankier and crankier. Finally the doctor comes in and tells me, ‘well, your results came back abnormal. You’re not deploying for at least 6 months.’ I just stared at her with a stupid look on my face and probably said something wickedly intelligent like, ‘uhhhh…’ She handed me my test results and said lots of reassuring stuff like, ‘this doesn’t mean you have cancer’ and ‘we’ll just need you to see a doctor off base for some extra tests and when those come back normal, we’ll ¬†send you again in 6 months to make sure it’s all clear.’ Huh. Not once did she explain what the test results meant, could have meant, or ask me if I had any questions. Guess it was getting close to 4:30pm and she just wanted to go home. But on the flipside, my feeble brain couldn’t think of any questions to ask. All my brain was doing was screaming ‘you’re not deploying! Whee hoo!’ Stupid brain.

Having never had an abnormal pap test in my 19+ years of getting them, I immediately went home and started googling. Well, not immediately. The first thing I did was the responsible thing – call my deployment manager and let her know I couldn’t deploy. I do still occasionally follow military protocol. It turned out my test results came back with pretty much the only 3 abnormal things they can measure on a pap. Atypical squamous cells – undetermined significance (ASC-US), atypical glandular cells (AGC) and high-risk HPV. After a little research, I learned that the ASC-US result is the lowest of the low for abnormal test results – the earliest possible detectable surface-type cell abnormalities that usually revert to healthy cells on their own. Ok, piece of cake. High-risk HPV wasn’t even too scary – an estimated 80% of Americans have some form of HPV – some of them cause no symptoms and some of them can cause cancer – but again, it usually goes away on its own. AGC – huh. That one was a little scarier. It’s a rare result – as in 0.2% of abnormal paps – that reportedly has a 50/50 shot of indicating a ‘serious medical finding’ and has to do with the glands inside the cervix, so it usually doesn’t pop up on a routine pap smear. Ruh roh. But I still wasn’t worried – all the experts say cervical cancer takes 10-15 years to progress from abnormal cells to invasive cancer, and this was my first abnormal test. So I went home and celebrated with my wonderful man about not having to deploy. Little did I know then that the universe was not exactly doing me a favor – which is exactly what we thought at the time.