The Waiting Is The Hardest Part

Today’s cancer-related word of the day:  scanxiety. 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.

The Road To Recovery

In the 9 months since my surgery, I’ve had ups and downs, made a ton of progress on the healing front, lost one oncologist and gained a new one, had another minor surgery to remove scar tissue, had another mini cancer scare, and finally generally come to a truce with the snarky voice in the back of my head. Sure, I’ve got another CT scan scheduled in a few weeks to make sure that some new/increasing pains aren’t a cancer recurrence, but overall I’m good. I’m looking forward and have an appointment in August with one of the best tattoo artists in LA for my celebratory one-year cancer free tattoo. Fingers crossed I didn’t jinx myself by making that appointment.

Now let’s see…where did I leave off? Ah yes – finally getting home from the hospital. I have to say, recovery was a bitch. I would have given anything to be able to sleep on my side. Or my stomach. Or flat on my back. Or to be able to stretch. Or eat real food. Or to not ever sneeze. Or laugh. (Good thing I’m married to a comic, eh?) Even with large amounts of painkillers, I was still uncomfortable and generally unable to sleep for longer than an hour or two at a time. And even then, I slept on my back, propped up with pillows and with pillows under my knees. I kept a small firm pillow by my side in case of a sneeze or a laugh – holding that pillow against my stomach kept me from screaming in pain if either of those things happened. I still needed a good 10 minutes to recover after I sneezed the first time post-surgery. Yay abdominal surgery and oodles of stitches! But overall, things were mainly irritating, uncomfortable and frustrating. The pain was largely managed by my popping a lovely dilaudid every few hours. (Seriously – best pain medicine EVER!) Other than having my mom here, the dilaudid was my favorite part of recovery. My husband would say in public that his favorite part was hearing that they successfully removed all the cancer. I think my husband would be lying. I’m convinced his favorite part was getting to stab me with a needle every day for 2 weeks. (I got sent home with a 2 week supply of syringes filled with blood thinner to prevent blood clots while I was mostly immobile.)

Eventually I was able to start getting around a bit better and was able to sit up and watch tv in the living room like a normal human being. Granted, even sitting up for an hour or two was exhausting and required a nap to recover, but soon I was back to vegging in front of the television like a good little American with no trouble at all. But I still slept – a lot. The simplest things exhausted me. I wasn’t allowed to lift anything over 5 pounds per doctor’s orders. I wasn’t allowed to lift anything heavier than the tv remote per my husband’s and mother’s orders. I was repeatedly told, ‘you only get one chance to heal properly.’ After a few weeks, that got more and more irritating as I got more and more stir crazy. But that is a true statement – even if you get tired of hearing it.

Finally, after a few quick return trips (where I realized exactly how many potholes and bumps there are in the roads here – OWWW!) to UCLA for post-surgery checks and let’s-see-if-Samantha-can-pee-yet checks, I got the catheter removed about 2 and a half weeks after surgery. Which sounds great, but wasn’t so great in reality when I had to drag myself out of bed in the middle of the night. *sigh* Slowly I started getting my strength back and was able to remain upright for 3 or 4 hours at a time. And 4 weeks after I was released from the hospital, my convalescent leave (6 weeks recommended by my surgeon) expired. The military docs only approve 4 weeks at a time no matter what the surgeon recommends. (Unless you give birth – then they’ll sign anything. Jerks.) So a month later, I dragged myself to the base hospital to meet with my brand new doctor. Oh, sorry. My brand new physician’s assistant. (Apparently I don’t rate a real doctor on base, even though I know they exist.) I told him I needed 2 more weeks – there was no way I could work 8 hours a day – and eventually had to beg him to give me 5 more days at least. His rationale for not extending my leave? I drove myself to the appointment. Never mind that when I got home, I went immediately to bed for 4 hours because I was so exhausted I could hardly move, or that I was in extraordinary amounts of pain. Never mind that my surgery had multiple complications and that I required a hospital stay 4 times longer than normal. Nope, I should have been good to go to head back to work. Awesome. Luckily, I have a great boss and a great commander – they told me to take my time and work up to full time. My first day back to work after 5 weeks at home lasted about 2 or 3 hours – after which I went home and went straight to bed. Good times.

After a few weeks of half-days, I eventually got back to working full time. I still am disappointed in the base hospital – the standard time off for my operation is 6-8 weeks. I got 5. Nicely done, Lt Physician’s Assistant. I honestly feel that this impacted my recovery in a negative way. But hey, at least he got me a referral to a physical therapist for my numb hand and numb leg. No wait – he actually made me pick one to get treated. Hand or leg. He told me he couldn’t get me a referral for both. I picked my numb right hand – figured I might need that to write or shoot or basically function. Too bad the physical therapist he referred me to doesn’t deal with nerve damage – which I learned when they called me to chat about what they could or couldn’t do for me. Rather than deal with Lt P.A. again, I spoke with my surgeon about it and decided to just see if my nerve damage would improve given time. And it did. Mostly.

Overall, I learned that when people say it takes a year to fully recover from a hysterectomy (radical or otherwise), they are 100% correct. It’s a ridiculously common surgery in this country (don’t even get me started on how quick doctors are to recommend them), so I think people think they’re no big deal. (A friend of mine who had the same surgery had a ‘friend’ tell her, ‘I know how you feel – I had my wisdom teeth pulled once!’) They really are a big deal. A normal hysterectomy is considered major surgery. A radical hysterectomy even more so. Add in the moving around of organs, tendons, nerves, veins and arteries to get to the lymph nodes that also needed to be removed, and it’s an even bigger deal. But 9 months later, I’m getting there. I’d say I’m about 95% right now. Sure, I have weird pains still and I still have a large chuck of my thigh that is half numb, but at least I can move my leg. And I’m still *knock on wood* cancer-free. Things could have turned out a lot worse.

Cut Me, Mick!

After lots of rambling blog posts, I figure it’s time to get back to the story. Last I left off in the whole cancer saga, I had been diagnosed, ran off to Vegas to get married and was getting ready for a major surgery that we hoped would leave me cancer-free. And that is where we pick up today.

August 9, 2012 – that was the date for my surgery. My mom had made plans to come visit and help out with things, and we wisely had her come out the weekend before. Since she’d never been to California before, we wanted at least a few days to do touristy stuff and to just visit while I was still a fully-functioning human being. We did Hollywood and the Walk of Fame, took pics of the Hollywood sign, stopped by Grauman’s Chinese Theater, had lunch at the Hard Rock Cafe and did a LOT of walking. We stopped by the Santa Monica Pier and took pictures of the ocean and enjoyed the evening air. We did some shopping and went out to dinner and just enjoyed each others’ company as much as we could in the few days we had before I turned into a bedridden druggie. I felt bad that her birthday was the day before my surgery and I had to spend that day doing prep for the surgery. Boooooo! Thrilling way for her to spend her birthday, I’m sure. But she didn’t complain once, nor did she rub in the fact that she had a birthday cupcake and could eat real food all day. She’s an awesome mom.

For those of you who’ve never had the joy of major abdominal surgery before, you get to spend the day prior eating zero solid food. Clear liquids only. Jello is ok, but not cherry-flavored/red jello. Of course – my favorite. Then the evening before, you get to do what’s called bowel prep. That involves drinking magnesium citrate and then suffering for hours. All of that is to ensure that your guts are good and empty when they start digging around and flinging scalpels about willy-nilly. It’s awesome. I never want to drink beef broth or chicken broth ever again. Jello can piss off as well. Thankfully, coffee was approved. 2 days in a row without coffee would have had me in jail for murder. And that is how I spent 8 August. Sipping broth, eating Jello and snarling at the TV any time there was a commercial with food on. I think I nearly heaved the couch at the TV when an especially tempting steakhouse commercial kept playing over and over and over…Oh, and I smoked. A lot. The plan all along was to quit smoking when I had my surgery. But by God, I was starving and nervous so my smokey treats were a source of comfort. We were all rather subdued that night – little chats here and there, but overall I remember us being kind of quiet. I talked to my dad back in Ohio, and I don’t know who else. We got my bag packed and puttered around the house until it started getting late. I had one last cup of broth (no liquid at all after midnight) then headed off to try to get some sleep.

The morning came entirely too early. We had to be at the hospital at around 5:00am, which meant leaving the house at around 3:00am. Ugh. Coffee was made for the cancer-free humans in the house and I paced around and smoked. I finished my last cigarette and we piled in to the car and started the looooooong drive to LA. On the bright side, traffic was the lightest I’ve ever seen it – mainly because no sane human beings are on the road at 3:30am. Or if they are, they’re just getting home from a really fun night. Drive drive drive…fast forward to arriving. We got all checked in, and waited. Then we got called upstairs to the next waiting room. I did some paperwork probably signing everything I own away to UCLA and absolving them of any responsibility if I died or ended up with a missing leg – I really don’t remember. After that, things are a blur. I got a snazzy hospital gown and met the 8,000 or so people who would be assisting/observing/cutting/keeping me drugged during the surgery. My oncologist/surgeon stopped by and my mom finally got to meet the man we’d been raving about. The best part came when the IV was in and they started the drugs that would help me drift off to a happy place. Ahhhhhhhhh.

And then I woke up to a nurse pulling off pieces of my skin. No lie. I was in the recovery room – still not 100% awake – and she was removing the circular sticker thingies that they attach monitors to during surgery. Unfortunately, my skin decided it would rather go with the stickers than remain on my body. Thankfully she figured it out after the first one and a half sticker removals. The blood and shrieking was probably a good clue for her. And then I fell back asleep. I remember drifting in and out a LOT in that room, and having lots of people ask me questions. I provided such intelligent responses as, “mmmph” and “uhhhhhgh.”  Or so I imagine – I was still high as a kite and was trying to hide from the pain. Finally I was awake enough to provide slightly more intelligent responses such as, “yes” or “no” and was moved to a curtained-off cubicle to recover until it was time to go home. Yep, that’s right. A radical hysterectomy and lymph node removal can be done as out-patient surgery, but they typically at least keep you over night. Thank you, American health care system. (As an aside, my grandfather had surgery to repair a hernia back in the 70’s or 80’s (I’ve had 2 hernia repairs – both out-patient) and he spent a WEEK in the hospital to fully recover.) The plan was to move me to a real room if one became available. If. In the meantime, all I could hear was people shuffling by my bed, nurses laughing and general mayhem. Not terribly restful. After much complaining (not by me – I was in a drug-induced stupor), the problem was figured out. Since my surgery had been done partially by laparoscope, the nurses saw that term on my paperwork, stopped reading and just assumed I’d had a minor surgery and I’d be up and headed home shortly. Ummmm, no. I believe it took a chat with the roving patient advocate to get things straightened out. Suddenly I was at the top of the list for a room. When one became available. And then the fun started.

After a few hours of seeing exactly how frequently I could push the button for my pain-killer pump/drip (some kick-ass dilaudid once every 6 minutes if you must know), it was time to kick my butt out of bed and make me start trying to walk. I was a champ and made it around the ward twice. I’m awesome. When I went to get back in bed, we noticed one slight problem. I couldn’t move my left leg side to side. At all. And then I noticed that my right hand was completely numb. Suddenly we had multiple neurologists stopping by to poke and prod and try to figure out how I ended up with nerve damage and how extensive it was. *sigh* But on the bright side, they suddenly found me a HUGE private room with a couch and (eventually) a recliner so Mom and Rudy could take turns sleeping and sitting next to me throughout the night. On the down side, I ended up staying in that private room 4 nights. Apparently I always have to be an over-achiever.

To make a long story shorter, the surgery and recovery sucked. Hospital stays suck. It never failed – every time I would finally start to get some sleep, someone would come in to give me drugs and take my blood pressure and temperature and make sure I was generally still alive. Apparently I scared them a few times with my so-low-we’re-not-sure-she’s-really-alive blood pressure, but I like to think it’s because I was just so comfy and relaxed from my happy drugs, and much less stressed after learning that the pathology came back clear and I was cancer-free! I slept off and on for days, I got poked and prodded by therapists and neurologists and had every person who had anything to do with my surgery stop by to check on me, I watched bad TV at 3:00am and I walked. A lot. That was the one recommendation I saw everywhere to help with recovery – to walk as much as possible. One of the worst parts of this surgery is gas pain. Yep. Not the removal of organs and cutting and chopping and stitches – the gas. They actually inflate your abdomen for more room to work, and a lot of the gasses they inject you with end up getting trapped when they sew you up. So picture the worst gas you’ve ever had – that pain that shoots all the way up through your shoulder, and thinking you might actually explode if someone poked you, and thinking that exploding would be better than being in pain. Now imagine that multiplied by 1,000 and you might have an idea. I lost track of the amount of times I cried from the sheer agony, even hopped up on one of the most effective (and most street-valuable) pain medications there is. And walking is supposed to help work it out of your system. It doesn’t, by the way. It just has to dissipate on its own.

The one thing I didn’t do was eat. Or use the restroom. Both of those are things you have to be able to do before they’ll discharge you. I finally tried solid food on day 3 – plain baked chicken. Nope. My stomach was having none of it – thank you 5+ hours of general anesthesia. And to this day I absolutely cannot eat baked chicken. Yay for new food aversions! And I learned that nurses get rather concerned when you start turning beet-red after being given new drugs and that I’m allergic to an anti-nausea medication. I also learned that you may joke that you have a bladder the size of a pea, but in reality you do not. Because another joy of a radical hysterectomy is waking up with a non-functioning bladder. They have to move the bladder out of the way, and in doing so your bladder turns into a lazy bitch. Oh, you’re going to move me out of the way? Fine. I quit. And that bitchy, non-functioning bladder can take months or years to stop being bitchy and lazy. So I got to experience another first – having a Foley catheter. Surprisingly kind of awesome. You know how you’re watching a great movie and you hate to have to run to the bathroom in the middle of it? With a catheter, you don’t have to. You know how you wake up in the middle of the night desperately needing to use the bathroom, but you’re just soooooo comfy that you don’t want to? With a catheter, you just stay in bed. So handy! But seriously, they are typically needed for just a few days after surgery. They removed mine on day 4 (I think) and had me see how things went. I sipped water all day, as usual. Nothing. Didn’t feel like I needed to use the restroom at all. Finally after drinking a ton of water, the nurse suggested I at least try to go, even if I didn’t need to. Nope. Nothing. But I started feeling…off. And then I started feeling sick. And then I started feeling like I’d been hit by a bus. Oops – turns out I had over a liter of liquid in my bladder, and I couldn’t feel it at all. Needless to say, my Foley and I were good friends for weeks. *sigh*

Finally on Monday morning, the gas was gone, I kept down some solid food and was cleared to go home to finish recovering – 4-6 weeks of staying home and taking drugs. Hallelujah! I couldn’t wait to get home to my bed! Granted, I wasn’t looking forward to a 2 hour drive home after having surgery, but hey, that’s what drugs are for. But wait – we need a doctor to sign this, someone needs to pick up your 42 prescriptions, we need you to sign this, we need to find you a wheelchair…ugh. From being told I was cleared to go home to actually getting out of the wheelchair and into the car was easily a good 5 or 6 hours. Just enough time for us to hit a shit-ton of traffic on the way home. Yay! Luckily, as my husband and mom started bickering about the drive, my drugs kicked in and I reclined my seat, hugged my pillow to my stomach and snoozed. Ahhhhh.

So there you have it. The story of my lovely hospital stay. There’s obviously much more I could tell, but that’s the summary. I wouldn’t wish this surgery on my worst enemy. Wait, let me think…actually, I would – because I’m kind of bitchy that way. The pain, the sheer helplessness, the pain, the constant stream of strangers in and out of your room who poke and prod you, the pain, the feeling of dehumanization you go through even with an outstanding medical staff, the pain and the frustration of your body just not doing a damn thing you want it to – it all sucked. But even with all of that, there were moments that were pretty awesome. Waking up at 2:30am and having your mom by your side immediately ask if you need anything. Hearing your surgeon tell you that your lymph nodes and all the other tissue they removed came back clear of cancer. Having your mother-in-law and her husband drive out to check on you and pray for you. Seeing your husband smiling through tears as he holds you and whispers, ‘my wife doesn’t have cancer.’ Having your boss stop by the hospital on his way back from a TDY just to make sure you survived surgery – even though it’s out of his way and he’s still got 2 hours to drive to get home. Phone calls to make sure you’re ok from your crazy Las Vegas family that adopted you as one of their own. E-mails from around the world from friends. The first hot shower when you finally get to wash your hair after days of laying in bed – even if it was short and you had someone waiting to see if you’d pass out or not. That first sip of coffee after days without. Realizing that it has been 5 days since you’ve had a cigarette and realizing that you don’t even remotely want one. Realizing that it was a long, painful and agonizing road, and there’s still a long way to go, but there’s a light at the end of the tunnel – yeah. That was good.

There’s still a skosh more to go with the story, but not much. I really just wanted to get the surgery/hospital stay portion of the story out of the way. I’m sure my husband and my mom could write pages about how those 5 days went, but I wanted to write my part of it as I remembered it in a general sense. There was a lot of frustration and anger and sadness and depression that I haven’t captured here – the surgery combined with a mini surgically-induced menopause is a horrible emotional storm – but I’ll save that joy for another day. For now I think reminiscing about the surgery and hospital stay is enough fun. 

Gimme Three Steps…

One step forward and two steps back. (Apologies to those of you who thought this might be a blog about the awesomeness that is Lynyrd Skynyrd. It is not. The title just popped into my head after I typed the first sentence. Maybe next time.)

Just when this gal was getting her life and head all squared away after the mind-fuck of cancer, the snarky little cancer voice that lives in the deep recesses of my brain decided to rip the duct tape off her mouth and say, ‘not so fast, toots. You’re not getting away that easy.’ Dammit.

A few days ago, all was good. I was feeling great, working out 6 days a week, eating healthy and generally kicking ass one day at a time. I was determined to turn 40 being more awesome than ever. (Yes, I turn 40 in exactly 13 days. I’ll be in St. Thomas, so if you haven’t had time to buy me a present yet, you’ve got a little extra time…) I had made an appointment on-base for my annual physical and was looking forward to bragging a little about how awesome I was feeling. The day of the appointment rolled around and the doc and I chatted about how I was doing after the cancer – both physically and mentally – how things were going with my routine oncology visits, and my general overall health. He seemed really happy with how I was doing and moved on to the poking and prodding part of the physical. Lungs and heart sound healthy, good blood pressure and heart rate, eyes are still 20/15 (thanks for the PRK, Air Force!), ears and nose look fine, no weird lumps in the neck…groovy. I am kicking butt for a change! Yay!

Then he asked me when I’d had my last ‘well-woman appointment.’ Ummm…it was a year ago when I started having the whole cancer issue. He told me I still needed to do them for the simple fact of needing breast cancer screenings. Ugh. So rather than make another appointment just to have a chick doctor, I went with the option of having him do it instead. After the last year of exams, surgeries and hospital visits, I’m not terribly bashful about who sees me nekkid any more when it comes to doctors. So he found a chaperone to make sure no inappropriate shenanigans occurred (wait…are there appropriate shenanigans? Discuss.) and started the exam as I proceeded to start counting ceiling tiles. Then I hear a ‘hmmm.’ No. No ‘hmmm.’ I don’t like ‘hmmm.’ He focuses on one spot and asks me if I’ve noticed any unusual or new lumps. I mentally sighed and thought, ‘don’t you think I’d have mentioned it, jerkface?’ (My inner voice is kind of a bitch.) Then I just said no. He continued feeling one spot and asked when my last period was. I continued staring at the ceiling, physically sighed and just let him think about what he’d just asked me. (For those of you who failed health class or haven’t followed my story, when one has a radical hysterectomy, one doesn’t have periods any more. The more you know…) It took a few long moments, but the light bulb finally went on as he rather sheepishly said, ‘oh, sorry.’ He then proceeded to tell me that he had found a 2 cm lump and that it was likely non-cancerous, but what with my history of ‘erratic cancer,’ he was going to send me to have a mammogram. Awesome.

We chatted a little more, and then I was done. I was ok until I got to my car. Then that bitchy cancer voice piped in with, ‘huh, where have you heard that before? That a tiny little thing wasn’t cancer and that you just needed one more test? How’d that work for you?’ Damn. And with that tiny little whisper, I had a tiny little breakdown. I’m sure I’ve mentioned this before – that the really awful part about cancer isn’t just the physical part. It’s the constant fear of what your own body might be plotting behind your back. It’s about keeping your sanity. Trying to move on. Trying not to worry about every little pain. Trying to logically tell yourself that odds are, you’re fine. All while that little voice in the back of your head that you thought was gone is getting louder and louder, and all the duct tape in the world won’t shut it up. So I wiped away a few tears, sniffled a little, then put on my big girl panties and went back to work. Things still hadn’t really sunk in yet, and I was just feeling numb. So not even thinking, I shot an e-mail to my husband and let him know how my appointment went. Oops. Perhaps a phone call might have been a better idea. My phone rang within moments of hitting send and I felt like a shit. I could hear the weight and worry in his voice, and I knew he needed me home. We made plans to have lunch together and then see how I was doing after that. I knew I would get absolutely zero work done, so I took a half-day, closed up the office and headed home. We held each other, we went out for lunch, we joked, we laughed, we contemplated getting me a very large margarita, we talked and generally tried to quash the worry. Then we headed home and I did my penance for my crappy lunch by working out for the second time that day. After that I googled a little and put off making the phone call to my folks that would start them worrying all over again. I actually considered not telling them, then realized that my mom would fly to California in a heartbeat and beat my ass if she found out that I didn’t tell her as soon as I had an inkling of another health issue. So I called. And now they worry and wait with us.

My first mammogram is now officially complete. And no, they are not fun. Slightly uncomfortable, yes. Painful, no. I’d heard not-so-good things about mammograms, and was a little concerned.  So on the bright side, I no longer have the worry of that unknown looming over me. Yay me! While I certainly won’t be running off to have my boobs mushed voluntarily, I at least won’t have a problem going for an annual check. So that’s a good thing. But now comes the bad thing – the wait for results. Or even worse – no results and a request for me to come back in for more tests. Because the one thing the technician told me was that at first glance, they didn’t see anything, but that I have dense breast tissue. *sigh* Of course.

For those of you still reading my rambling, dense breasts make reading a mammogram very difficult. Cancer shows up as a white ‘splotch’ on a mammogram because the x-rays don’t pass through it well. ‘Normal’ breast tissue is fatty and x-rays pass easily through it – so it shows up as dark on a mammogram. Dense breast tissue is less fatty and more comprised of connective tissue which doesn’t allow the x-rays to pass through easily – and shows up as white. See the problem here? I’ve read that trying to find cancer in a dense breast via mammogram is like trying to find a polar bear in a blizzard. Again – awesome. The other kicker? Having dense breasts has been found to increase your risk of breast cancer 6-fold. (And by the way, ‘dense’ is a radiology term that you’ll only find out with a mammogram – not something you’ll find out by groping yourself. So stop it.) What else increases breast cancer risk? Being tall. I shit you not. Being an ex-smoker doesn’t help either. Nor does never having kids. After doing some research, I’ve found that damn near everything increases your breast cancer risk.

So with that, I’m doing my best to keep breathing, keep living and not to completely lose my mind while I wait. Because the reality is that there’s an 80% chance that the lump is completely benign. I rationally understand that. And I’m sure I’m fine. But dammit, it’s going to be a long week or two until we find out for sure.

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.

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!

 

 

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.

Cervical Cancer, HPV and Burkas

Today’s going to be a little different of a blog entry for me. All of this has been rattling around in my noggin since I got my diagnosis. Hope you enjoy. If not, oh well – no one’s forcing you to read this. I hope. 

Quick, name the color of the ribbon for breast cancer awareness. Easy, right? Everyone knows it’s pink. Quick, name a major charity that supports breast cancer awareness. Again, easy. Susan G. Koman. Quick, name a celebrity who has or has had breast cancer. Easy – Sheryl Crow, Christina Applegate, Kylie Minogue, Edie Falco, Cynthia Nixon…and I’m sure I could come up with a few more if I tried. Now try this – name the color of the ribbon for cervical cancer awareness, a major charity that supports awareness, and a celebrity who has it. Go ahead. I’ll wait. Oh and no using google, either. (Or Bing, or Lycos or whatever other hipster search engine you kids use nowadays.) Yeah, I didn’t think so. Don’t feel bad – I didn’t know any of that either. But the answers are: a) teal and white, b) there really isn’t one, and c) there aren’t very many, and the ones who do, you’ve never heard of.

Fun stuff. Since my diagnosis, I’ve been looking everywhere for information and the one thing I’ve found is that no one wants to talk about cervical cancer. Shhhhh – it’s icky. People don’t mind talking about breast cancer and raising awareness, because let’s face it – boobs are sexy and pretty and have cute nicknames and everyone loves them. ‘Save the ta-ta’s!’ Cervixes (cervicii? cervixen?) are none of those things. They don’t even have a cute nickname for pete’s sake. But they’re kind of important and are a part of the vagina – which I’m pretty sure a lot of guys at least like – but it’s still a little taboo or embarrassing to bring up. I decided to say screw that – I’m talking about it. It’s a part of the female body and dammit, no one should be embarrassed to talk about their bodies. No one should be embarrassed about cancer either – the more people that are aware and talk about it, the more people who might actually stop hiding from their annual exams and stop suffering in silence.

I’m guessing another reason that no one wants to talk about it is because most cases (about 70-80%) of cervical cancer are caused by HPV – human papillomavirus. And ewwwww – you only get that through sex! Whore! Harlot! Whoa there – before we start tossing women back in to nunneries and branding them with scarlet letters, howzabout we take a look at the facts. There are approximately 120 types of HPV and about 15 of them are considered ‘high-risk’ – they can cause cancer. And surprise! You don’t have to have sex to get even the high-risk types. The others cause various other charming symptoms, or no symptoms at all. If you have a plantar’s wart, you have a strain of HPV. *gasp* What have you been doing with your feet!?!? But seriously, doctors estimate that about 80% of Americans have HPV – so before you get out your best throwing stones and your burkas, do some damn research. Oh, and while you’re at it, research the snazzy new HPV vaccine if you have young women in your life that you care about. Almost kinda sorta political type statement here – while I don’t agree with the government or schools mandating the HPV vaccine for kids, I fully support young ladies getting it. Oh, and young men too. Because gals aren’t the only ones getting and/or spreading the virus. Menfolk may not develop symptoms from the high-risk strains, but once they have it, they continue to carry – and potentially spread – the virus for the rest of their lives. One last snazzy fact about HPV? You could have gotten it 30 years ago and never knew it. Until it decided to rear its ugly head and start causing some problems. And once you have it, you always have it – it may go into hiding and not be doing a damn thing other than hanging out, but it’s there. It won’t even show up on a test for it unless it decided to come out and start wreaking havoc. If it’s in ‘remission’ it’s undetectable. Fun stuff, huh? And that boys and girls, is how oodles of women and men go through lives completely unaware that they even have it.

So if you know someone who has cervical cancer (besides me), please do your best to treat them no differently than you would if they had any other cancer. It’s not their fault, they didn’t plan it, they didn’t ask for it, and they don’t need people judging them. All they need is for you to agree with them that it sucks and let them know if there’s anything you can do, you’ll do it. Sending goofy cat pictures, random funny e-mails and texts that just say ‘hi’ are wonderful if you aren’t sure what to say. Silly things like that let the person know you’re thinking about them without pressuring them to talk if they don’t want to, and it just makes the day brighter. Trust me on this. Ooooh, and no matter how much you may want to, do not say these words – ever: ‘Just remember, things could always be worse.’ No shit. I could have cervical cancer, breast cancer, be having a heart attack while I catch on fire and find out bacon is extinct – and there could always be something to make it worse. But you know what, ‘just’ having cancer kind of sucks. Some days we are completely aware that things could be worse and we appreciate that what we’re going through isn’t the absolute worst thing ever. But unless you have a direct connection to our brains, you have no idea what’s going on in there and you will probably say that at exactly the wrong time. Sometimes all that sounds like is, ‘suck it up, buttercup. It’s not that bad.’ And that sounds like you’re diminishing the fact that we have cancer and the shit storm that is going on 24/7 in our heads. And then we feel even worse because, you’re right – it could be worse and here we are all feeling sorry for ourselves. Really, it’s a no-win situation for all involved.

Hmmm what else….oh – that 24/7 shit storm in our heads? Yeah. It’s a hoot. From what I’ve gathered on-line on a few different cancer chat sites, it’s completely normal and we all go through it. It’s called different things by different women, but the most common is ‘cancer head.’ It’s that voice in the back of your head that is there from the second you get a diagnosis. It apparently starts to go away the longer you’ve been cancer-free, but it’s always there in some shape or form. For me, it was that voice whispering ‘cancer’ at the oddest moments. It was that voice that was trying to convince me I was going to die. It’s that voice that has made it impossible for the last few months to simply sit and watch a TV show or read a book – nope, no downtime, because that’s when it gets the loudest. It was that voice that I could never shut up completely. What’s extra special about cancer head is that when you finally do get its ugly little mouth duct-taped shut, it just sits back there and stews and comes back with a vengeance when you least expect it. I finally learned to stop trying to avoid it, and gave it a few minutes (ok, maybe hours) every day and facing all of those fears, worries and possibilities head on. And hallelujah, that worked. Mostly. Even just an hour of reading things about cancer on-line every day (which can get really depressing) was better than ignoring it. And honestly, I’d rather be educated about what was going on with my body anyway. I think I found the end of the internet and read every possible article, website, chat board and research paper ever written on cervical cancer. And that turned out to be a good thing. Because it’s my body, my health and my responsibility to know as much as I can – and there are a lot of scary doctors out there who have no freaking idea about abnormal pap smears beyond the most basic and common of abnormal results. But that’s a whole different blog.

For now, I think I’ve gotten a lot of what’s been rattling around in my head out. Is it a little disjointed? Probably. Is it a little rambly? Probably. (And yes, I’m apparently making up words now. I kind of like rambly.) But it all needed to be said. I’ll get back to the rest of the story tomorrow. Or the next day. Depends on how much longer I’m grounded to my bed. For now I think I’ve said about all I have the energy for.

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.