The Waiting Is The Hardest Part

Today’s cancer-related word of the day: ┬áscanxiety. It’s the gnawing worry one feels when one is waiting for an upcoming CT scan and suffering through the long agonizing wait for results. It sucks. And yes, it is a thing. It’s a thing I’m dealing with now.

(Disclaimer – I swear I really am not a neurotic nutbag who thinks she’s constantly on the verge of death. This blog was started as a way for me to share my journey with other cervical cancer patients and for me to empty out the words that build up in my head on occasion. I promise, I am not running about willy-nilly 24/7 convinced that the sky is falling. But the fears that sneak up on me…those I need to get out of my head. What’s the old saying? A problem shared is a problem halved? Or some such nonsense? So consider it me sharing and you taking a portion of it from me. You’re welcome. Just wait until this cancer-thing is behind me and I start pouring out the rest of my neuroses. Mwah hah hah!)

Tomorrow we make the long drive back to UCLA for more CT scans. Pelvic and abdominal, with and without contrast. Then we make the long quiet drive home to wait a week or two for the results. As I’ve said before, the worst part of this whole thing is all of the waiting for test results. I wish they were instant. But instead, we have to wait on the experts to examine all of the snazzy little black and white images of my innards and hope they don’t see any new tumors or spots. Then again, who knows – maybe the whole point of the long wait is to purposefully give your mind time to explore all of the possibilities – as awful as they may be. To wrap your head around the what ifs. To run through all of the scenarios. That’s a new thought – I may have to explore that one some more and let that idea roll around my brain for a bit. Hmm.

At this point, I have been in remission/NED for almost 10 months. The ‘normal’ recurrence time frame for ‘normal’ cervical cancer, if it happens, is around 1.5 – 2 years post-treatment. Too bad I’m not normal. I won the odds lottery with a rare sub-set of an uncommon cancer, aka adenosquamous carcinoma, and it likes to come back and visit a lot faster – usually in half the time as ‘normal’ cervical cancer. I think the average is 9 months or so after treatment. I’ve been having some weird and worsening pains in my upper abdomen, hips and pelvis for a few months now. It started as random stabs of pain and has slowly become constant with random extra stabs of pain that take my breath away. I do not like it and I am not amused. Hence the reason for the new scans.

There are, of course, a multitude of other reasons that could, and probably do, explain the new pains. It could simply be adhesions from the surgery – that’s where as you heal inside, things kind of stick together and stay that way via the magic of healing and scar tissue. It could be that my hernias that I had repaired 10+ years ago have re-herniated and need to be repaired again. It could be that I have the new trendy gluten intolerance and it’s messing with my stomach and intestines. It could be that I have an ulcer. It could be that I’m just getting old. It could be any of a thousand things. Or it could be that my cancer missed me and wanted to come hang out again. Because you know, that bitch just can’t take a hint.

As I’ve been poking around the interwebs trying to edumacate myself and see if there are any new advances/breakthroughs in cancer research, one of the truly frustrating things is a lack of information. (What?!?!? A lack of information on the internet? Impossible! But true.) There are two main types of cervical cancer and most research dollars are logically spent on them. Unless you have squamous cell carcinoma (75-80% of all cervical cancers) or the less common adenocarcinoma (20-25% of all cervical cancers), you’re kind of out of luck as far as research goes. If you have either of those types of cancer, you can rest assured that there have been hundreds or thousands of studies done on your cancer and that the common characteristics are largely agreed upon. The less common cervical cancers that COMBINED make up about 5% of all cervical cancers – clear cell, glassy cell, small cell and adenosquamous carcinomas among quite a few others – have scant available information. (Hell, even my spell check doesn’t recognize adenosquamous as a word.) I usually just find a short blurb under the heading of ‘Other Rare Cervical Cancers’ in scientific journals and books. ‘Hey, here’s some other cancers that we don’t see very often so we don’t bother researching. We don’t know much about them, so good luck’ is the vibe I get there. Awesome. I really hope that UCLA is using my info for a study or research or something. It would be nice to contribute in some way that might lead to someone further down the road finding useful information on this cancer. Because the info that is out there SUCKS!

**Warning – the following paragraph is a lot of contradictory statistics and pessimistic snarling. Feel free to skip over it while I get some depressing crap out of my head. Thanks.** It is incredibly frustrating to read contradictory studies that vary so widely in their results. In the past 10 months or so, I’ve read that at stage 1B, my cancer (and no, I’m still not used to typing ‘my cancer’) has a 10-15% recurrence rate. And that it has a 70% recurrence rate. That it has an 85% 5-year survival rate. And that it has a 27% 5-year survival rate. That it’s highly aggressive. And that it’s no more aggressive than any other cervical cancer. That it has a poor prognosis. And that it has a similar prognosis to ‘normal’ cervical cancer. And then there’s my personal favorite that I learned today – one medical textbook reported that the 5-year survival rate in stage 1B patients whose biopsies showed lymphatic invasion is 69%. If there is blood vessel invasion, then it’s around 30%. Fun stuff, huh? Guess who had angio-lymphatic invasion? (‘Angio’ refers to blood vessels for those of you who skipped anatomy.) Turns out having early-stage cancer is good (‘good’ as in treatable. Not ‘good’ as in yay cancer!). But having early-stage cancer with tiny cancer cells floating throughout your lymphatic/circulatory system is bad. Doctors are understandably hesitant to be throwing chemo and radiation at every patient with early-stage cancer, but it turns out that can actually be a bad thing. Surgery without chemo/rad as a follow up is largely the norm for stage 1, but can leave the possibility open to one of those tiny floaty cancer cells finding a new home somewhere else and sneakily taking up residence without anyone noticing. Multiple studies have shown that in later stage cancers (2, 3 and 4), that same finding simply isn’t a factor. That microscopic invasion makes zero difference unless you’re stage 1. Whee hoo! So glad THAT’S the one thing multiple studies agree on. *eyeroll* **Annnnnnd end snarly depressing cancer rant**

So yeah. CT scan tomorrow. I’m feeling a little better about it after rambling through today’s blog. I just have to keep reminding myself that one groovy thing I’ve got going for me is that I know I’m not a number or a statistic. So here’s to being like all the normal ladies with normal cancers and continuing to be cancer-free. I guess we’ll find out soon. Just not soon enough for my liking.

Stoopid scanxiety.

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!