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.

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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.