nowhere man

I'm mostly here right now so as to prove myself not to be a liar. I did, after all, promise that there would be more to come. Fortunately I didn't assign myself any deadline for that event, because I surely would be long overdue by now if I had. I've meant to write, really I have. There are so many excuses to give: limited sitting-up ability, no internet access at home, dedicating my time to recovering rather than writing about it, etc. And of course there is that all too familiar problem of the longer you put off doing something, the more of it there is to be done, and so then you are even more reluctant to start it at all. Regardless. Here I am. So much has happened!

To settle the big question first, I am doing well. Quite well, to be specific. One of the sadder proofs of that is the fact that I am now at work (don't tell anyone I said that, Janae). Besides the one downside of having to again behave the part of a gainfully employed member of society, though, there are a lot of great things about starting to feel semi-normal again. For one, I get to drive my car. I did miss it. And I get to park it in handicap spots once I get to my desired destination. I'm pretty sure that little bonus is never going to get old. Plus I get to perform basic tasks like getting myself ready for the day, going to the store, participating in social interaction, and so on. I still feel like I'm adjusting--it's weird how "normal" life can feel so strange after two months of not doing any of it. Plus, most of it hurts, at least to some extent. I'm basically off of my pain medication, more due to choice than to a lack of need for it, so I don't really do a lot before I get too tired and need to rest. Still, I'm progressing.

Yesterday my mom went home. It was a sad day for me. Not only did it make it perfectly clear that I am now officially on my own, it also represented a great decline in fun in my life. The whole time she was here I always had someone to hang out with and do things with and laugh with, and now there will obviously be a lot more alone time. But that's how I'd generally preferred it for the two years before Mom was here, I'm sure I'll be used to it again in no time. Still, my mom is really fun. Seriously.

The first time I typed the thing about always having someone around, I accidentally wrote "to hag out with." That's kind of hilarious, especially as something to be said about spending time with your mom.

Okay, the intent was to write about all the millions of changes and hardships and developments that have happened in the process of getting to where I am now, but I don't think it's really going to happen. There's just too much. To sum it all up, yes getting through surgery recovery is really hard, but yes it is a lot easier when you have people helping you every step of the way. Dad and Erica came out for a while too, and it was incredible having my whole family, except some little dancing burrito that was missing, help me move and clean and get settled and make sure I had everything I need to be comfortable and happy. I'm still working on getting my back strong and healthy and not so hurty, but I can definitely say that the worst is behind me. Hooray.

cry baby cry

There is so much to be said, but unfortunately of the three main positions bodies may usually find themselves in--lying, sitting, or standing--sitting happens to be the one that is most painful and most directed by my doctors to not do. Sitting also happens to be the position most required for blog posting, so there will not be much to this.

To sum up: The surgery was about seven hours. It went about as well as it could. The stay in the hospital had its ups and downs. My pain medication type and dosage was switched a few times and at times it was great, and at others I didn't understand how anybody ever willed themselves to live through post-op procedures. Hospital food is as bad as everyone jokes about it being. Some nurses are amazing and helpful and caring and considerate; other nurses make you cry. Also making you cry = anesthesia. Hello emotions. My family and friends are completely awesome in every way and every visit or text or phone call or card or gift or online message has done a big part in helping me get through each day and feel like it's not a struggle I have to go through alone. I came home Saturday. That was earlier than expected. It is hard work doing the normal things I'm supposed to do, but good work. Chocolate is delicious. Pain meds are finicky. I've gained about two inches, as the doctor predicted. I'm officially Tall. It hurts a lot, both frequently and deeply, but the parts of me that matter most are feeling completely peaceful and happy and relieved and grateful.

Also, I'm not at work today.

More to come, I promise.

the night before

Less than twelve hours from now I'll be in a hospital gown, in a rolling bed, with an IV in my arm, most likely having my anesthesiologist explain what's going to happen to me. It's funny, I've been really nervous and scared for months, but now that it's really finally here, I feel relatively calm. You know how half the fun of Christmas is the anticipation and the waiting for the big exciting day? I'm pretty sure the anxiety of major surgery is the same way. The worst part has been having so much time to think and worry and stress and now that it's just going to happen, I can look at it practically and feel at least a little bit ready and stop freaking out so much.

Friday I went in to have my blood taken and do other pre-admitting stuff. I had misunderstood about what the whole giving blood thing was--they weren't actually taking enough of my own blood to give it back to me during my surgery, they were just taking a sample so they could find compatible blood in their blood bank and have it ready for me. They sometimes do the storage thing for patients where they get their own blood back, and originally my doctor told me that was what I'd be doing, but apparently that plan changed somewhere along the line. I'm very fine with that. I don't do very well with giving blood in general so the less the better, plus who knows, maybe I'll get the blood of some amazing athlete or music virtuoso and have this incredible extra talent for a few days.

When I went in on Friday they also put two hospital bracelets on me which I've had to wear all weekend. One is just my name and birthday and all that other identifying information, and the other is the serial number that my blood was labeled with, to make sure that nothing happens to have a mix-up and let the wrong blood inside me. My blood is #UVH41176, if you were curious. The bracelets have been slightly more annoying than I anticipated they would be, mostly because they have this seemingly magical ability of letting water in them but having no way to remove said water, but in a way they have been another helpful part of making it all seem more real and manageable instead of just this vague scary thing. Plus, of course, I'm always a fan of extra unmerited attention, and wearing hospital bracelets all weekend has given me some of that. Sweet.

I'm not sure how long it will be before I can update on here, but I will try to as soon as I can. Supposedly the hospital I'll be at will have wireless internet so hopefully I can write something from there to let everyone know how it went. It might be some pretty creative writing that comes out of me those first few days, depending on how much morphine I'm on at the time. Maybe I'll be the next Lewis Carroll. Until then, thank you all so much for your thoughts and concern and kindness and support and . It has already made a huge difference in this experience and I know it is just going to mean so much more on the other side of the surgery. Thanks, times a million, to all of you.

Oh, and also, I'm very pro-visitors and pro-phone calls. Please don't hesitate.

fixing a hole

A blog entry, in outline form:

1. I have an appointment set up for this Friday to go give my own blood for an hour or two so that they can pump it back into me during my surgery. This makes me feel:
____a. Nervous
____b. Creeped out
____c. Like this whole thing is suddenly a lot more real. Realer? Whatever.
2. Dr. Bacon recommends fusing only the top curve for the following reasons:
____a. Fixing the top curve will by default straighten the bottom one
______i. I don't really understand why or how
______ii. I don't really care, as long as he's right
____b. Most of your movement in your back comes from your lower spine
______i. Preserve lower spine = preserve mobility
______ii. Mobility = happy!

paperback writer

I've liked Dr. Bacon from the start. I don't know if it was the twinkle in his eye, the tanned skin suggesting he appreciates time in the outdoors, or the calm and confident way he talked about my procedure, making me feel from the very beginning that it was not nearly as big of a deal as I'd previously thought. Overall I was completely satisfied and happy with my doctor and didn't think he needed to do anything to further prove himself to me.

Well, Dr. Bacon, you've outdone yourself.

So there I was, Friday morning around 7am, lined up outside my local Borders, desperate to get an orange wristband that would be the key to my being one of the first in the Provo/Orem area to obtain a copy of Harry Potter and the Deathly Hallows. As I stood chatting with Mandy, I noticed that a few spaces behind me in line was Brother Simpson, a former bishopric member of mine. Sorry to any non-LDS reading this and confused by the lingo--just go with it. Naturally Brother Simpson asked me all about what's been going on with me lately and one of the first things to come up was the fact that I've had a pretty ridiculous year, health-wise. I told him about my thyroid troubles, and then told him in a few weeks I'd be having surgery to have my spine straightened, because I had scoliosis. At this, I noticed the man directly behind me in line perk up and whip his head around to listen to my conversation. Normally I'd be slightly put off by such blatant eavesdropping, but I have to admit that it kind of is a weird/interesting thing to overhear someone talking about, and I'd have probably eavesdropped too.

After talking to Brother Simpson a few more minutes about it, I managed to get a glimpse of the face of the man so obviously listening to me talking, who was now smiling about what I was saying. It wasn't just some creep who was morbidly amused by the idea of major surgeries--Dr. Bacon! I wasn't entirely sure it was him, because I've only actually seen him in person once, and apparently scrubs and glasses make a big difference in a person's identifiability (pretend it's a word). Maybe Superman's disguise wasn't so far-fetched after all.

Once I recognized him and was fairly sure it was indeed C. William Bacon, MD, I asked, "hey, are you my doctor?" to which he replied, "are you Madam Keck?" Three cheers for doctors who remember their patients names. And about eighty seven cheers for doctors who spend their Friday mornings waiting in lines to get Harry Potter books Friday nights. This is definitely the doctor for me. It was pretty funny, plus I got a free consultation while standing in line. Not bad.

Oh, he recommended that I only fix the top curve. So, there's that.

drive my car

One thing I've been wondering about my surgery recovery is when I'll be able to drive again. When I had my thyroid removed in January, I discovered that even though I felt pretty healthy overall after a few weeks, I still couldn't drive due to the acute pain I found myself in at even the slightest turn of the head. It was pretty frustrating to feel normal besides that one little thing, but to still either be stuck at home or be totally dependent on others for rides. I suppose I could have risked it and driven anyway, throwing peripheral vision to the wind, but I'm too much of an obsessive blind-spot-checker for that to have ever worked. So naturally I'm concerned again about how long I'm going to have to go without spending any good quality time with my darling Civic, and today I learned the answer. Four to six weeks. Egads! That is a long time of being chauffeured around! Granted, the majority of that time I won't want to be leaving the comfort of my bed anyway, but I have a feeling that I'm eventually going to want to be able to get up and go and my body won't want to let me. I guess it will be my own little taste of what it's like to have a suspended license. No worries about me pulling a Paris Hilton though. I promise I'll stay off the roads until I'm fully capable of looking all the way over both shoulders.

twist and shout

I'm not normally one for taking pictures of myself in a swimsuit and posting them on the internet, but here's the exception. I need to have some "before" photos to compare with my post-surgery ones later. So with the help of the self-timer on my camera, I snapped a few. I need to take a few more, specifically one from the other side so you can tell the difference between my two sides, but these will have to suffice for now. This post is rated PG-13 for partial nudity.

it won't be long

Apparently this whole surgery thing doesn't really lend itself to a lot of regular updates. At least, not for now. Nothing has really changed in the past few weeks, but I have learned a little more about what I can expect and hope. Much of that has to do with my awesome mom having the gusto to call up my doctor with a long list of questions prepared to ask him, since I'm either too lazy or too in denial to do it myself. I think when my doctor initially told me I needed the surgery I was too shocked and worried about dealing with it emotionally to think of any practical questions about the procedure, so it's a good thing we're starting to find some of those things outs. So you want to know what she learned? Lovely.

For one thing, the doctor will be using a posterior approach on me. That means he'll use a long vertical cut along my spine through the back. There are three ways scoliosis surgery is typically done, either through the front, the side, or the back. I'm glad he's going through the back because to me it seems like the most direct and obvious way to get to a spine. I'm all for doing the obvious. Obvious = logical.

Dr. Bacon still isn't sure whether they're going to try to correct both my curves or just the top one. The top one is the one that poses more of a threat to my overall health, so if they can correct it significantly enough, they might not do anything to the bottom one. The good thing about this would be that I wouldn't experience the limitation to my mobility that I would if they put rods in for both curves. The bad thing about this would be that it leaves the possibility open for having to have another surgery later in life to correct the bottom one. I'm undecided about which option sounds more appealing. Please feel free to cast your vote in the comments section.

One awesome thing my mom found out was about my activity post-surgery. When Dr. Bacon told me I'd be in the hospital for a week or two and out of work for two months, I took that to mean that I'd be completely bedridden for quite a while and that I'd be using a big portion of that time slowly trying to get myself up and walking. That is sort of true; it is going to be slow and painful. But apparently the very day after surgery I will be up and walking at least a few minutes a day and will have to try to walk more and more each day. The goal is to be able to walk two miles two weeks after my surgery. I'm very relieved about this, especially because being able to take a few steps from my hospital bed to the bathroom the day after my surgery and all ensuing days sounds much better than what the alternative would be.

As far as what degree of correction we can expect, we still don't really know a specific number to hope for. Obviously they can't make it perfectly straight, but they do expect to get it straight enough that my shoulders will be even with each other and my internal organs will be free from excessive strain. We also found out they plan to fully correct the twisting of my spine, which means I won't have my Quasimodo right shoulder blade protrusion that I hate so much. Yay for that. I forgot to mention earlier that this straightening will result in my being an inch or two taller. I'm still not sure how I feel about that. On the one hand, it makes my chances of becoming a runway supermodel a lot higher; on the other, it eliminates two inches' worth of the male population from my possible dating pool. Hmmm.

Obviously there will be a lot to work on physically once I have my surgery as far as trying to recuperate and get myself able to do active things again. Right now, though, I'm finding myself much more concerned about how it's going to affect other things going on in my life. Being out of work for two months is certainly not going to be the best thing for my financial situation, and probably won't be too enjoyable for my office either. The contract for the apartment I live in right now runs out at the end of August, so in addition to trying to recover from surgery I'll have to somehow get moved to a new place. I'd been hoping to move to Salt Lake in August but with this in the picture now it's looking like I might have to postpone those plans. I also had planned to try to go on a trip somewhere this summer (specifically, this weekend) since I haven't had a vacation since I went home for Christmas, but now my vacation will have to be a thrilling trip to the Utah Valley Regional Medical Center. I've grown really used to living alone and doing everything for myself and being pretty independent, and I think it's going to be hard to go back to needing others so much for basic things.

All that being said, I realize that I am extremely fortunate in that I have such incredible family and friends who are, without hesitation, willing to help me get through all the unpleasantries of moving and being broke and being generally helpless for a month or two. I know that all those things I just complained about are going to turn out fine, and that I will be well taken care of and will not have to really worry myself about much besides getting better. I'm really, really grateful for that. This whole thing would be exponentially worse if I didn't have such wonderful help getting through it. So, thanks guys. And by "guys" I mostly mean "Mom," but there are a lot more of you who I know are going to do more than a fair share of niceties for me as well. Thank you in advance for that. Really.

Also, I hope everyone knows that the runway supermodel thing was a joke. Sadly, the dating pool thing wasn't.

a day in the life

A friend just asked what kind of effects my scoliosis causes besides back pain. She probably wasn't hoping for answer quite so thorough as this; nevertheless:

The worst possible result of my curve progressing too much would be that on a long-term scale, my heart, lungs, and other internal organs would receive continuous stress due to being compressed into a smaller space than what their DNA tells them they should have. As you might guess, hearts and lungs don't like this. They couldn't stay in optimal health under such conditions, and apparently keeping your heart and lungs healthy is sort of important, so getting the surgery to straighten my spine will be a big breath of relief for them (literally, on the part of the lungs).

Aesthetically speaking, the worse the scoliosis gets, the worse I would look. As of now my right shoulder is about an inch higher than my left. If it were allowed to get much worse, I would start to become more obviously bent over. Because in addition to being curved my spine is also rotated, my right shoulder blade sticks out a lot further than my left. I'm usually pretty careful to not have pictures taken of that side of me, or I look slightly humpback-esque. My crookedness is not usually very conspicuous, but there are a few places where it always gets noticed. Any time I'm getting my hair cut the hairdresser tries to get me to "sit straight" a couple times before they'll be convinced that I really am as straight as I can be. Same thing with getting my picture taken. It's annoying sometimes that clothes never fit exactly right, but they can hardly be expected to, consdering what they have to work with. For my senior prom I actually had a tailor make a dress that was altered to compensate for my higher right shoulder, so looking at me I looked more even on both sides. That was nice of the tailor.

The bigger problem with the crookedness would be that the worse it got, the more difficulty I'd have with mobility and my range of motion. I think that was redundant. If I didn't fix it now, I'd have a hard time doing basic things like walking and getting around on my own later in my life. I really enjoy walking. It's something I'd like to always be able to do.

So, even though most days I don't really notice my scoliosis, the truth is that it is slowly and steadily becoming more of a hazard to my overall well-being, and if I want to stay as healthy and happy as I feel now, this definitely needs to get fixed. Luckily I live in a time and place where that's actually an option.

I'm looking through you

To add a visual, I thought I'd put up a picture of the spine in question. This is actually the x-ray from a few years ago, so add about ten degrees of curvature to both halves of the S, and you get how I am today.

In addition, you get a lovely view of the blossoms outside my window. Bonus!

the long and winding road

First, for anyone who may be reading this and just learning for the first time about my jacked up spine, a little history:

In sixth grade I had my first scoliosis screening at Eisenhower Elementary School in Leavenworth, Kansas. The main thing I remember about this is how they separated the girls from the boys and how we all uncomfortably giggled about having to take our shirts off for the nurse. We were also supposed to be using the waiting time to work on memorizing the beginning of Martin Luther King's "I have a dream" speech. I totally aced the speech memorization--that's an indication of how concerned I was about the possibility of scoliosis. It was a meaningless word to me at that point. I went in to the nurse, bent over, she glanced at my back and put some kind of level on it, declared me to be fine, signed my paper, and sent me back to class. Scoliosis was out of my mind.

Then in seventh grade my family moved to North Carolina. I remember complaining more and more about how my back hurt pretty regularly, and always feeling like I wasn't really taken seriously. After all, how could a little girl who was perfectly healthy and who'd never done any real work in her life have back problems? Please. Fortunately, in North Carolina, they do the scoliosis screenings in seventh grade instead of sixth. So one afternoon we lined up and waited for the nurse and bent over. This time it wasn't so quick. "Hmm." "Could you touch your toes again?" "Hmm." I don't remember what happened between then and my first doctor's appointment, but it happened pretty quickly thereafter.

They first tried to help it by having me wear a lift in my left shoe. The theory was that my off-kilter spine was caused by my left leg being slightly shorter than my right, thus putting my hips out of alignment, causing my back to try to compensate by curving.

This attempt pretty much cracks me up now. This centimeter-thick piece of styrofoam will do the trick! Right.

After a year or so of the shoe lift not doing any good and my curve continuing to progress, they decided to put me in a brace. At least, I think that's what the doctors told me; all I heard was "we've decided to take away your social life and self-esteem." Awesome. The day I went in to have it molded they had to mark some measurements on me, and I was so furious with them for putting red writing all over my new swimsuit with the fish on it. Man, that was a cute swimsuit. Was. Needless to say I was not taking the whole brace thing very well. It was uncomfortable, made me feel ugly, and ruined my favorite swimsuit. Pretty much the trifecta of adolescent suffering.

There was one stroke of luck though--remember the early 90s? Remember how wearing huge oversized t-shirts was totally fashionable? Good thing. I could wear my brace to school under my XXL Marvin the Martian t-shirt and not be too extremely conspicuous. I also quickly learned that the more okay and confident I felt in my brace, the more normal it was to my friends and peers. It was fun to be the tough girl who'd have all the boys in Mr. Eldridge's North Carolina History class try to punch her and only get their hands hurt. I liked tapping out beats on my plastic abs on the way to soccer practice with my friends. It wasn't really so bad.

Unfortunately, it also wasn't really so helpful.

Flash forward a couple years. I'm sixteen, no longer growing, and thus no longer required to wear my brace. My curve has progressed some over the past few years, but seems to have stabilized. I'm at about 55° on top, 43° on bottom. Oh yeah, I guess I should mention, I have an S curve. Some scoliosis just curves one way or the other, but mine has two curves in opposite directions. Like... an S. I'm at the point now where I'm not growing, apparently my spine isn't getting any worse, I'm not quite bad enough to need surgery, and I seem to be totally functional and healthy with the exception of regular back pain. But, you know, that's normal right? For me both then and now it just seems like part of living is that backs hurt. Please don't rub it in my face that the same may not be true for everyone =) It's easier thinking that it's normal.

So, what was I saying? Not growing. Not worsening. Basically fine. Awesome. I was left with instructions to get it checked every couple of years to make sure it was staying the same, and as long as it did, I'd be fine. No worries about health problems or long-term effects. I was completely happy with this conclusion.

As agreed, I got my back x-rayed every few years. No change at 17. No change at 18. No change at 20. I figured I was done.

Then a few weeks ago my mom convinced me I needed to get an x-ray again. It had been three years since my last x-ray and it's always good to just know for sure that I'm still okay. It would be a good time to take advantage of the insurance I have and just get it checked. So I set up the appointment, got the x-ray, looked at it and tried to determine whether it was different or not from my last one, gave up trying, and decided to just wait and see what the doctor said. On June 13th I had my first appointment with Dr. Bacon, who took one look at my back and said "why didn't they fix this five or six years ago?" Uh-oh. I didn't like where that was heading.

It turns out that in the past few years my curves have progressed (but not the right curves). The top one is now about 65° and the bottom one about 55°. That's it. Surgery. There's not really a question anymore. So on August 6th, 2007, I will be straightened. There is a whole lot that I think and feel and wonder and worry about this, but I will have to write about those things later. It's already been way too long of an entry just telling the story up to this point. Stay tuned for further updates on the saga of my crooked back. Also, I hope you enjoyed the double meaning of the title of this post, because personally I think it was a pretty awesome choice =) Ta.