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.

Who knew LA had friendly people?

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

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

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

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

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

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

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

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

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

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

Vegas, baby!

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

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

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

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

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

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

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

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

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

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