Tuesday, February 10, 2015

The frustration and of impatience: I wanna be better nowwwwwwwww!

Part 7 and most recent of my C&Ped updates from my GoFundMe page detailing my decompression surgery--and how I want to be better NOW. NOWWWWWWWW.  (Still stinkin' true.)
Well! Three weeks post op as of yesterday. And, also as of yesterday, I am officially medically retired and no longer an employee of Baldwin Park Unified School District. I'm a retired teacher. 

Now, I am back home to life and its vibrant chaos, and I find I am struggling with a tremendous impatience (Who, ME?). I am now on the other side of this much-anticipated surgery after an *excruciatingly* long year of referrals, doctors, tests, results, confusion, and research pushed and ultimately strained my determined, obstinate nature to its limits. 

Now, it is done, and remains inarguably the right thing to have done, but...now what? 

I wait, and I rest, two things at which I have always been plain terrible. 

As the travel and surgical dates neared, I became fearful of this time period--this time when I'd be briefly feeling worse than even before surgery--as my body recovered. I came home unable to drive, nonetheless grocery shop, take the boys to school (or pick them up), fiddle around the barn (nonetheless go for a trail ride or take Firefly for a drive), cook, sweep the floor, do laundry. What little independence I still clung to as my health slowly slipped backwards was gone, and though my logical side knew and knows it is temporary, it has proven a bit more psychologically traumatic than I anticipated. I know I will continue to get better--how *much* remains the great mystery--but in the interim, I wait. 

For the record (and I see no shame or stigma in saying this), I started seeing a psychologist about three months ago. She has been a tremendous guide, helping me identify and contend with the many beasts beckoned by such severe, involuntary, life-altering change in so many (she suggests, all) aspects of my life, while also helping me recenter and think and deal with just today. Not tomorrow or six months from now or two years from now, just...today. 

I am fortunate to have *immediate* positive results from this surgery, easing this struggle. The years-present hand tremors have disappeared since the day after the surgery, and the skull-crushing headaches that were becoming more and more frequent also remain absent. Once or twice, a bit of laughter that normally triggered hours to days-long pain seemed to start up one of the headaches; there was this familiar pulling, slightly pressured feeling. The pain hovered at about a 4, but then instead of building, and building, and building over the next few hours before locking me in agony for up to three days, they faded in under an hour. They just...went away. 

I cling to that when my patience to BE ALL BETTER NOW is stamping its foot loudly, though admittedly oftentimes the impatience is louder than my logical counterarguments. I have been gently, lovingly reminded by so many of you that I have had major surgery; parts of my brain and skull were permanently removed, fercryinoutloud, and I was in the hospital for five days. My mind may be fresh, but my body endured a massive trauma (however planned and masterfully administered). That I'm weak, wobbly, and easily exhausted is to be expected and even embraced. (Ugh, just typing that makes me bristle.) 

So, I take a deep breath, and I contend with today. I thank my friends for rides, meals, help with the horses, help with the boys. I rest when my body demands--mainly because its demands are REALLY loud right now and impossible to ignore. I also cry when I need to, wipe my face, rest in Brian's arms, cuddle with my boys, and sing along to music that lifts my soul, no matter what the music critic in me says about the artist or the song. 

This is only three weeks post op, and it will be a full year--49 more weeks--before I see the full benefit. The only way to get there is one day at a time. 

And today, I had the strength and clarity of thought to write this. Tomorrow? Well, tomorrow is not today. I'll deal with it, live it, when it comes. 

Much love, appreciation, and gratitude to and for all of you.


Part 6 of my GoFundMe updates, C&Ped here.  This was written four days after we returned. I aim to return later and add some of the photos described here that were shared on my GFM page.


Brian and I had our uneventful flight home Friday, woke up two groggy boys at 1am to hug and kiss, and crawled into bed shortly after. A few short hours later, the pair of them blasted into our bedroom to crawl in bed with us for a snuggly reunion. (Well, bouncy, noisy, snuggly reunion.) 

Since being home, I find myself wanting to Do! Things!, then rapidly being reminded I am still in recovery. I function well, then need a hard nap. (Very hard--yesterday's was nearly three hours, today's over two hours, during which at one point I thought I was on the plane home.) 

I'm wobbly but manage without the cane at home because there are plenty of walls, pieces of furniture, etc. to balance me in a wobbly moment. That doesn't stop Trent from chastising me if he doesn't see me using it--"Mom, where's your candy cane?" he asks. Heh. So, I’m using it just a little bit more when he’s around. 

Jett is a little weirded out by my scar, but is clearly very happy to have me home. Now we swing in to the home routine again, with some modifications, and I’m back to reading Harry Potter books to him at bedtime (we just started The Prisoner of Azkaban). 

I do wish to remain transparent about finances relating to this surgery as much as I can, and now that we're home, the numbers are coming in so I can to share what we know thus far. The actual medical bills likely won't get here for a few months (oof, the waiting), but the hotel and rental car numbers are in. Please forgive that I am rounding since I haven't gone through the receipts just yet and am going by memory. The hotel was approximately $3200 for the 14 night stay, managing to save a fair amount using street parking rather than the hotel's $14/night + tip valet for the majority of the stay. We paid a hospital discount rate of $185/night and were initially assuming the total would be about $2700 or so, but ugh...forgot about that part with all the daily taxes and fees. The rental car, again for 14 days, was about $1200. So, the travel portion of this surgery totals about $4400. 

It feels awkwardly improper for me to talk about money like this, but again, I wish to be transparent. Once the medical bills come in, I'll be certain to post them as well. Missing chunks of my brain or not, I'm a fighter and keen negotiator, and will not put up with an insurance company trying to play a very expensive shell game with us. I have already been put in contact with a health advocacy group and they're ready, too, to bring it should it need to be brought. ;) 

Regardless, though, there is no question--NO question--that going cross-country to see Dr. Bolognese and have this world expert do my operation was the right decision. Absolutely no question, not for me or Brian, who in fact said if we're paying for it for the next few decades, it's worth it. 

This is where I will attempt, and no doubt fail spectacularly, to express gratitude for the outpouring of kindness we are receiving from so many different aspects of our lives. For one, Brian's work has set up a dinner schedule so that for the two weeks my mom was watching the boys. *plus* the first two weeks after my return home, we don't have to worry about cooking--which, I'm realizing, also means I don't have to worry much about grocery shopping or kitchen cleaning. Our first full day home, I was thinking (worrying) through my exhaustion about lunch/dinner, and I realized--there were some leftovers from the meals in the fridge. There was plenty for everyone, for both meals. That moment was yet another time when the tears came, for all the best reasons. 

I wasn't sure I was up to driving the boys to school and we were tying to figure out how that would work...and then the adult daughter of a dear friend called me and volunteered herself. All this week she's driving the boys to school, with me in the passenger seat, and has offered to take me to my doctor appointment to get stitches out Thursday if I need. (I'm hoping I can manage that brief little drive myself by then.) 

I miss my horses so, but right now the barn is incredibly unsafe for me. The uneven ground alone is a risk even with my cane, so leading a horse, grooming them, mucking stalls, feeding--all of that is pretty far out of my reach at the moment. And so--yet another friend has been lovingly tending to my horses on a regular schedule, grooming them, bathing them, exercising them (she got Tril to jump!), all the while sending photos and even a daily diary of their adventures. Again, it brings tears. 

I'm so overwhelmed with gratitude, I feel a strange futility trying to express it, because my expression is vastly disproportionate to what we are being given. (But I still keep trying.) This leads me to a strange place: I am learning to breathe deep and accept it. Accept the love, the friendship, the generosity, the kindness, for exactly what they are: love, friendship, generosity, kindness. 

And...yet once more, thank you.

Abby-Normal-Be-Gone: description of surgery and what to expect next

Part 5 of my updates from my GoFund Me, combining two updates in one:

As I can be wordy (who, ME?), I will focus *this* update on the rest of the hospital stay and surgery. I'll write a separate post about the week after discharge and my follow up with Dr. B. 

I left off with the immediate moments after surgery-the drunken haze of semi-consciousness as I slowly came out of general anesthesia. My body, convulsing its offense at the presence of its old surgical nemesis, so angrily and frequently expelled stomach contents that I burned my esophagus. The nurses were on to this certain result (took me a while to connect the dots), starting me on Pepcid as soon as I could swallow anything. I'm still dealing with nasty heartburn from time to time--woke me up for a good hour of OW last night, in fact. 

I was originally scheduled to go to ICU, but, as often happens, there was no room ready for me. Instead, I wound up staying the night in the OR recovery room. Brian, who hadn't seen me in nearly 7 hours, was finally allowed to come in and visit just shy of 11pm. I do the feeling of immediate relief when he showed up. There was my Safe Place. While I seemed completely out of it--I wasn't particularly responsive--I knew he was there and I won't forget the consolation just knowing he was near me. He told me Dr. B told him my brain tonsils were thicker than imaging showed, but otherwise, everything was as expected and the procedure held no surprises. 

Now, normally for a primary caregiver like Brian, there are no limits to visitation, but OR recovery is a different story. I was being constantly monitored and hovered over by at least one, if not two, nurses, and in *this* particular wing Bri's presence was welcomed by me, but in the way for them. They gently made it clear to him he needed to come back tomorrow when I was in a regular room. I was still so out of it--only waking up slightly to retch--that in hindsight, his leaving was not stressful on me. 

However, Bri recently told me I broke his heart when he had to leave that night (as he was being gently shooed out the door). He told me he had to go and would be back as soon as visiting hours allowed the next morning, and I just whimpered a very pathetic, "Nooooooo..." "I'm sorry, honey, but I'll be right back as soon as I can." "Nooooo..." Awww, poor Bri. As I said above, in hindsight, it was all such a blur of time to me it didn't matter, but I do recall in the moment wanting my Safe Place with me, but poor Bri did, indeed, have to go. It'd been a very long day for him as well, after all. 

When he showed up as soon as allowed the next morning, I was still in recovery, but eventually a regular room was made available and I was wheeled into the unit for brain injury and stroke. I suppose brain surgery counts, too. 

I stayed a total of 5 days, 4 nights in the hospital. Each day was a drastic change over the day before. First 24 hours in my regular room, no way no how nuh UH could I imagine being able to leave the hospital. But, as promised, PT Amy showed up that first morning saying the goal today was to get me sitting up, on my feet, and walking three steps to a chair. I looked at her like she'd completely lost her mind. (As opposed to, well, me.) But, I did. Still woozy, still lightheaded, still disoriented, they made sure I was well pickled in medication before trying this challenge. I was proud to sit in that chair for 40min--then oh so eagerly hobbled back into the hospital bed. Day 2, I walked the hall and sat in the chair for an hour. Day 3, I walked around the entire unit, went up and down 4 stairs, and sat in the chair for 2 different 45+min periods. Day 4, I went for multiple walks and was finally cleared for discharge. 

Regarding pain: The crown and back of my head was and is actually mostly numb--turns out some nerves were severed in the process. Dr. B explained those types of nerves will grow back in 6-12mos "like a lizard's tail." So, the good news that brings is I have very little incision pain. What DOES hurt are the muscles and ligaments severed during the surgical process. Still today, even the lightest touch makes my muscles whimper. Neck, shoulders, center of my back, jaw...CRAZY sore to the touch. 

However, I have a high pain threshold. That isn't a brag; as much as I like to think I'm tough, I think it's more a matter of how I've been forced to adapt. But, what this meant was the nurses were practically scolding me for not using my pain pump enough. Then pain management people would come in and look at me down their noses: "You are hardly using your pain pump!" Me, mentally: Oh yeah, that thing! :::pushes button::: Needless to say, weaning me off of it was not an issue. 

Day 5, I was discharged and ready to go back to the hotel and complete my recovery. No way no how could I imagine flying cross-country--yet.

Now, on to what I've been really eager to get to and I'm sure you're most eager to hear: the immediate, noticeable effects of the brain surgery. 

Within hours of being back in the hotel room, I noticed something: my hand tremors were gone. Not reduced, GONE. For about the last 2 years, I noticed my hands would shake, particularly after movement. Walking around, hold out hands, tremor. Initially, they came and went. I then chalked it up to being too stressed in the rush of getting ready in the morning. Then, the tremors just decided to stick around. Starting in February 2014, the tremor in the left hand was consistently worse and longer. August 2014, during a tandem walk (heel-to-toe; you see it used in DUI tests) portion of a neurological exam, my hands started severely shaking because, as my neurologist explained, I was concentrating. WTF? 

I called these tremors my stupid parlor trick--it was the one thing I could do, every time, to show people a symptom when they asked how my condition affected me. Some days they were awful, shooting up my arms and even into my voice, but most of the time they were just there, annoying me. 

But when I woke up from surgery, they were gone. GONE. 

I still test myself, holding up my arms in the way that always triggered the tremors, and nothing. Gone. This was the first thing that made me cry, and still does. 

Also immediately gone was the sleep apnea I'd just been diagnosed with in September 2014. Heck, I've only had the CPAP 2mos. Brian repeatedly expressed stunned surprise over this one. Yes, I still lightly snore (have ever since my babies), but the deep choking sounds and gasping for air? Gone. 

(Gonna be interesting explaining that to the doctor prescribing the machine and to my insurance, who monitors my use of it.) 

I previously described how the headaches have changed, and it is still hard to get a good solid grasp of how much they have changed. My head hurts. A lot of it is occasional sharp twinges, likely from peeved nerves who'd been cut/jostled/harassed during the procedure. My eyes ache if I lie flat for long, but well, that's adding pressure to a the swollen incision area, so that's understandable. I feel tension at the back of my head, but that's most likely from swelling and things being pulled back as I was stitched. But the whole-head, vice-grip, ruin the rest of my day (if not the next few days) pain? Not a sign of it. Not a single hint. Gone? Merciful heavens, I hope. 

I'm eager in the months ahead to see if my other neurological abnormalities change. Dr. B told me he could only guarantee relief from the headaches; everything else was icing on the cake. Already that includes my tremors and apnea, but I'm curious about these: 

* Positive Rhomberg. If I stand with my eyes closed feet together, I cannot balance myself and start to fall. Resultingly, walking through a dark hallway can be a bit like being a pin ball machine--I've had to keep my hand on the wall as I go. 

* Positive Hoffman's reflex/Hyperreflexia. Flicking a finger a certain way causes my thumb to vibrate, a sign of hyperactive reflexes. I have it in both hands, but the hyperreflexia is more severe and generalized on my right side. In the exam just before I flew out here, it was very apparent--tap the left knee, twitch. Tap the right knee, get out of the way. 

* Loss of temperature sensation. About a year ago, we noted this in my lower right leg--freaked me out a bit, actually. Touch me with an ice cube or very hot water, and I know you're touching me, but can't tell the temperature. This is a big red flag to docs because it indicates a spinal cord (or higher) issue--local nerves do not control temperature sensitivity. Incidentally, Bri did test this a few days after my surgery, and not only did I feel the cold ice cube--the cold feeling lingered for a while after. That is a very good sign. :) As this is one symptom that tended to come and go, be better and be worse some days, I'm eager to see if it's come and GONE. 

But the main remaining symptom I'm most hopeful is included in that icing on my headache-gone cake is muscle spasticity. I want to be able to exercise again, however mildly, but I can't with my thighs seizing up after a couple stairs, or my calves seizing up two minutes into a walk, or my forearms seizing up just currycombing my horse. But MAN I really want to be able to move again. 

Now! Well, what now? I saw Dr. Bolognese for a post-surgical six days later and learned the following: 

* It will take a year to see exactly how much benefit I gained from this surgery, but he said I will see 90% of the changes by 6mos. 

* The tremors present-then-absent are attributed to how my cerebellar tonsils were wrapped around the portion of my brain stem that control the arms. He did stress this is a very difficult location to reach; a centimeter here or there, and he could have easily killed me. I get the impression there are few docs that would have been willing to take on that challenge and succeed with the level of art and skill he displayed. 

* He also was not surprised the apnea was gone, and was hopeful for me that my severe fatigue will alleviate as I can get some naturally restful sleep for the first time in over a year. 

* Dr. B closed my incision himself (good, since the plastic surgeon he sometimes uses in more complicated cases charged a fellow patient six figures!); everything is dissolvable except my top and bottom stitch, which my PCP can remove. 

* I can shower/get the incision wet after 2 weeks (ugh); complete immersion, like swimming, will be a good month or so. 

* No lifting, reaching up, pushing anything more than 5lbs. That means grocery shopping carts (!!), getting things down from shelves, gallons of milk...aw crap, just realized it's grooming anything above Trilogy's shoulder too. 

* I will start on PT immediately when I get home. Focus, like with my back surgeries, is core strengthening and range of motion. 

Now...the big question is one he cannot answer, and I know it. Since I probably have a connective tissue disorder--I really should get genetic testing to confirm this--is there a risk of repeat surgeries and (what I dread) cervical fusion? There is no knowing. All we can do is monitor my cranio-cervical junction and watch for any sign of instability. 

Here's the bummer. Chiari is incurable. Treatable, but incurable. This surgery has already provided massive relief and more than I'd hoped for, but I do need to stress it almost certainly won't erase all of my long list of symptoms. Nerves are too freakin' sensitive, and once damage occurs, it can rapidly become permanent. Not always, but often. Heck, I have permanent nerve damage from the massive herniations that led to my back surgeries, and I'm very fine with them because it's more than a fair trade to what I was living with before. Painless but annoying muscle twitches along the outside of my left leg? SURE, I'll take that over being completely immobilized. 

So, in the next year, we will learn what and how much remains damaged, and what bounces back. And I can say right now, if it's just the headaches, tremors, and apnea that are gone, that is MORE than a fair trade for everything else sticking around. I do get the funky feeling of ants-crawling up and down my head and arms still, but seriously...FINE. No pain, no interference with function, just weird. The brain fog, cognitive errors, and sensory overload are maddening and annoying, but intermittent...FINE. 

I can live with all those and their similar minor symptom companions. I can live being different, but functional. 

I can LIVE.

One Week Post Op: Changes are a-changing

Part 4 of my updates, as C&Ped from my GoFundMe page:
Okay! I think I can do this now. Turns out recovering from brain surgery is not, you know, all TA DAH! UP AND AT THEM! 

But! I am doing remarkably better. Like, in all ways. Like, it's weird. I'm not sure how to go into the details of the ALL, because I really want to share the ALL, so I'm just gonna start. Not quite James Joyce stream-of-consciousness happening here, but it may be a bit rambly. 

Surgery was a week ago today. That is very difficult for me to grasp for many reasons. One, it's over. I'm on the other side. *I had brain surgery.* HAD. Not going to have, not need, not scheduled, HAD. Two, I was discharged from the hospital after 4 days and am semi-functional right now, 7 days after being admitted. The days in the hospital are a bit of a blur, albeit for good reason, so the concept that I *was* there is a bit hazy. 

The hospital was just...amazing. Afternoon of, I was checked in, undressed, IVed, wrist-banded, and left waiting patiently in the OR, uh, prep room? Waiting room? Whatever you called it. This was where Brian and I waited for everyone associated with my procedure came to introduce themselves and hand me papers to sign while I was coherent enough to sign them. First, there was Dr. B, who was far briefer than I'd expected--but, we *had* seen him just the day before in a sort of presurg meet-and-greet and he'd explained everything then, so I get why he didn't linger again. Then there was the anesthesiologist, Dr. O'Neill. Really liked her. Very precise, focused, friendly. But I had to warn her--my body and general anesthesia do NOT get along. Nope. Not even a tense truce. "Okay, I'll give you x-y-z to help with nausea." Having had some success in the past with anesthesiologists outwitting my body's desire to expel all the things as I recover from being put under, I had hope she would be as successful. (le sigh) Thing I didn't consider was I've never been under this long, and never had the whole puke/dizzy/balance center of my body (brain stem) jostled in those back, sinus, and Cesarian surgeries. But, O'Neill was great. She explained the fascinating, if rather creepy, process of putting an "A-line" in my wrist for the procedure. It's sort of like an arterial IV, except nothing more than a sensor goes in. This was a way for her to monitor my blood pressure with literally every beat of my heart, rather than the awkwardness of the blood pressure cuff and its intermittent timing. 

Now, a parenthetical here--I only remember them using the A-line left in my left wrist once I was in recovery (easy way to draw blood, among other things), but judging by the fascinating zombiefication on my arms, they most decidedly put one in both sides. And now, a week later, they look AWFUL. I mean, in a creepy-cool, holy-crap-I-could-have-a-walk-on-spot-for-The Walking Dead awful. So of course, I'll share pics of them later. ;) They do hurt a little, bruised-like, but nowhere near the drama of their appearance. 

Okay, back to the cast of characters. Someone else who came along was an "electro-physiologist." This pleasant guy explained that he was going to be putting electrodes on my body to monitor the various nerves branching out from delicate brain-land. Once I was out, he was switching to needles (!) inserted on top of the nerves (!!!) so that Dr. B and all involved could very precisely ensure that they weren't damaging/touching/jostling/pestering any of the affected nerves branching out. 

Seriously, their attention to me and attention to detail was and is astounding. 

I was only delayed an hour or so, so I was wheeled into the OR at around 4pm. The patient waiting in the--uh, stall?--next to me, I overheard, was having her surgery delayed at least 2-3 hours because whatever was going on in her assigned OR had emergency complications. My thought at the time was...well...I'd rather be the one delayed than the REASON for the delay. That's scary stuff. (Other Person seemed understandably disappointed, but also reasonably patient and accepting.) 

So I was wheeled into the ice-cold OR and cautiously gave the place a look over. White boards, clocks, storage cabinets, metal tables...I mean, it looked like a highly sterile work environment. Which, uh, is exactly what it is. But I found it oddly disconcerting that in this fairly nondescript room I was going to be strapped down, semi-upright, and have my head cut into for the next 6 hours or so. 

Then Dr. O'Neill gave me happy sedative juice and I was fiiiiiine with everything. More people introduced themselves (love that they do that)--Dr. B's nurse, assistant, I don't even remember who--and there were lots of grins and warm faces. Dr. B said hello and, uh, other things I don't recall because then I heard Dr. O'Neill say "Okay, I'm going to help you sleep now," and that was IT. 

I woke up in that awful haze of post-general anesthesia semi-awareness and general misery. This is actually what I'd been most nervous about--the immediate recovery. My body, again, HATES anesthesia and punishes me severely for its use. But um--I ain't going without it, so deal, body. 

I don't remember any "OPEN YOUR EYES LAURA. WAKE UP YOU JUST HAD SURGERY," like I've experienced in my back surgeries (that nurse ranks as my least fav ever in post op)--just moaning, groaning, and hurting. My head? No, surprisingly. It was more or less numb. What hurt like crap was my neck muscles, my left hip, and my left elbow. (Turns out, that has to do with how I'd been strapped down.) 

And then, the vomiting came. And returned. And returned. And returned. And...yeah. I have NO idea how many times it was, but I just have a vague memory of feeling not barfy for a few minutes, then barfy, then repeat. Over and over and over and over again, for hours. Sweet nurses gently wiping my mouth and bringing another little pink barf tub. I heard the anesthesiologist (or...uh...some female voice off to my right) at one point saying, "Wow. She is REALLY sensitive to anesthesia." Oh, indeed I am. They fired everything they had at me--I think it was at least 3 anti-nausea meds, plus something for my crazy dizziness/lightheadedness--and still the violent and oh so frequent retching came. It got to where it hurt my throat, and now a week later, I've realized this is why they prescribed Pepcid for me--I'd burned my esophagus. 

Now, I do want to share one immediate change in my symptoms that I noticed through the hazy anguish. Vomiting, like coughing, laughing, sneezing, and the like, increases intercranial pressure. It has, in the past, greatly magnified my Chiari headaches and been one of many triggers that make the next few hours--and frequently, days--a misery of increasing pain and pressure that leaves me in varying degrees of agony for varying lengths of time. THIS time, just a few short hours after being sewn up, well yes...it hurt. Of course. A chunk of my skull was cut out, my dura opened, my brain cut into. BUT. Even *then*, the sharp pain that came with the retching almost immediately went away. It was like 5 seconds of OW OW OW MY HEAD and then...oh, okay, better now. Every time, every convulsion. That was the first sign something Big Was Different, and it was beautiful (if, uh, ugly). 

Okay. This is where my head and eyes start to hurt, their way of saying "Yo, enough. Rest NOW,", but there is more I do wish to tell you. My follow up with Dr. B yesterday was amazing, and already, I am seeing borderline miraculous changes--maybe not "borderline." So I shall rest--during a lovely drive with Bri around Long Island--and be back with more later. 

Much, much, MUCH love to you all. More than I can ever express, but I'm going to at least try: I love you.

It Is Over. Hubby's just-after-surgery update

Part 3 of my C&P from my GoFundMe page updates. This was written the night of my surgery on January 13, 2015, by my wonderful husband.
Long Island. Long day.     
Lest anyone think that Laura's made an incredibly quick recovery since surgery, I should probably start out by noting that this her husband, Brian. Hi there. 

Now that I think about it, I probably shouldn't start out noting that. I probably should have led with the part where I tell you the surgery is complete and went well. Ah well. Now you know what manner of writing to expect with me instead of her. 

At any rate, we checked Laura into the hospital around 1:00, then did our best impression of a couple who was waiting patiently for the next several hours. Closer to 4:00 than the scheduled 3:00, we said our goodbyes and they wheeled her in. She asked that they do a wheelie into the OR, but her nurse seemed a little uptight and did not comply. (No thank-you cookies for you, Nurse No-Wheelie.) 

Then there was some waiting. Several hours worth, actually. Sometime around 9:30, I spied a man with a jacket, bags on his shoulders, sporting an air of it's-late-I'm-tired-and-it's-time-to-go-home. I immediately recognized him as Dr. B. With his usual brevity, he told me everything went well. The tonsils (the part that he removed) were a little thicker than expected, but that wasn't a problem. The pressure of the CSF, the size of the herniation, the pressure on the brainstem were all as expected and were dealt with as we had discussed. 
It took quite a while before they allowed me to see her in the recovery room as Laura was a while in coming out of anesthesia and then quite nauseous as she did. In fact, she was pretty miserable when I was finally able to see her. There was vomiting and there was pain (and medication for both, neither of which had yet to take effect before I left). There was also very little lucidity, but hopefully enough to understand (as I told her repeatedly) that things had gone well. I was told a couple times that there wasn't anything to do for her now except to let her sleep. It felt like those awkward hints that one sees in the movies or on TV at the end of a date, where the person doing the hinting doesn't want to break the other person's heart (at least not all at once) and tell the other person it's time to go. I came out and asked how long I was allowed to be there. Nurse Hints-A-Lot said people typically visit the recovery area only for short periods. She then gave me a card with the phone number of the unit and her name and said I can call anytime and check on her. She and the other nurses seemed caring, friendly, and such, even if unwilling to tell me to leave. Feeling that she was in good hands, I said goodbye to Laura and left. 

We're supposed to see Dr. B. again tomorrow, so perhaps I'll have more info then. In the meantime, thank you. Thank you all. You've all been ridiculously supportive. And I'm tired. Goodnight. 

Tomorrow is my New Year--New Life!

Part two of my C&P of updates from my GoFundMe page to here. This was written the day before my surgery.
Well, tomorrow is the day. My new year. 

I'm ready. I'm surprisingly not anxious; it seems most of the anxiety was in the week prior and in particular the days before flying. Now, I'm ready to just go forward and get this done. This has been a long, lonnnnnnng road...I'm eager to be at a junction and on to whatever is next. 

I realized that with surgery tomorrow, I was not going to be permitted to eat or drink anything after midnight (turns out it's even worse--11pm! Boo!). Then I realized...if surgery is at 3pm, I'm going 16 hours without food or drink. And I'm certainly eating nothing after surgery--so I will be eating nothing tomorrow. Well! We must EAT! today! We went out for amazing New York bagels today. I had a multigrain with cream cheese, lox, and tomato. YUM. (And right now, I'm having cookies and milk in bed.) 

Also, knowing how dehydrated I'm going to feel, I have been guzzling 16oz bottles of water--I think I'm up to 5 or 6 now. I remember from my 100 degree summer horse showing days how important it is to hydrate not the day of the event, but the day before. I figure if I'm thoroughly hydrated today, it will make tomorrow less miserable. 

Presurgical testing was today. Oof. It was scheduled for 12pm. I didn't actually begin testing until 2:30pm. Now, remember how I was hydrating myself? Yeah, my bladder was reminding me. But, I figured someone was going to have me pee in a cup, so I held it. That got a wee bit uncomfortable. Then when the nurse brought me in, I mentioned wanting to get the cup and get it over with because I had to go, and she said, "Oh, we don't need that if you're not symptomatic for a UTI." :::facepalm::: Looking at my face, she added, "The bathroom is around the corner!" I bolted. 

Thankfully my presurgical tests done at home helped cut short the exam time--no need for the EKG or chest x-ray. Just some blood drawn as apparently, my pregnancy test is outdated. Yeah, THAT'S what I need right now. 

Anyway, there was very little in a way of testing and far, far more in the way of history and intake. All my conditions, medications, allergies, symptoms, pain severity, etc. It got awkward when she asks how much I can walk in a day, on average. Um...there is no average with me. There's today, there's yesterday, there's tomorrow, there's the next day. I also don't get short of breath or in pain; that's not what limits my walking. I get legs that turn to lead and calf muscles that feel like they fill with marbles. Thanks though to my Fitbit, I know I average about 7000-8000 steps on my not crappy days, so that's what I went with. Then she asked about my headaches. Would I describe them as sharp, dull, throbbing, piercing, pressure...? Umm...all of the above. It depends on the day. Today: mild and dull. Yesterday: pressure behind my ears and sharp pain coming out my eyes. When asked to describe how the pain typically radiates and I described how it starts at the base of my skull like a dull, intense squeeze then shoots through my eyes, she said something along the lines of, "How do you live like this?" Shrug. Today wasn't bad (although I sneezed in the middle of typing this and now my head is cranky--hopefully it calms down and doesn't move into angry), and yesterday, Tramadol helped bring the pain down a couple notches so I could still enjoy my husband's company. I live like this because it's the life I'm given. Not that I'm thrilled with it--I do aim to make a rather big change tomorrow. 

After testing, we swung by Dr. B's office to pick up a form. While we were there, I asked if we could maybe say hi and meet in person--everything we'd done so far was over Skype. Sure enough, they welcomed me to wait the twenty minutes or so for him to finish with his patient and then brought us in to an examining room to meet up with him. When he came in, he was very friendly, very funny, and very warm--there was no feeling like we were a pain in his behind for adding an additional stop to the end of his day. We expressed mutual pleasure for seeing each other in the flesh, and he joked and turned around to show me he did, in fact, have a back side. 

Then he went over the nitty-gritty of tomorrow. I'm to show up two hours earlier than the surgical time of 3pm, but it will be about 90 minutes from that point before they begin to cut. The surgery itself is about 4-5 hours, so, allowing for the prep time following check in, the earliest everything will be Done is 8:30-9:30pm EST (5:30-6:30pm PST). Now, Dr. B emphasized that surgery can run late if the preceding procedures in that OR run over--he joked he's not going to go in and kick everyone out--so it may be much later. I understood (especially considering my experience with presurgical testing). He then made an amusing comparison. You have to hear this with a thick Italian accent and picture it said with a smile and a twinkle in his eye. "You know how they say the cows, when they are going to slaughter, if they are stressed they don't taste good? It is important that you do not stress because the tissues will not heal as well after." So, moo. 

He said that the immediately after surgery, he wants me to be moving my neck side to side, and the day after surgery, he wants me spending 45min in a chair and walking up and down the hallway. It is very important, he said, that I be up and moving so the muscles do not heal while seized and in spasm. Drugs, you will be my friend. 

Oh, speaking of, funny thing--the presurgical nurse repeatedly said I need to use my pain pump when the pain is mild. "Do not wait for it to get severe." This is incredibly novel to me--I have lived with mild pain for ages. I've pushed through it and dealt with it; mild pain is my good day. The idea of muting it at that point is new and I have been repeating her instructions to myself so it sticks in my memory. I understand how awful bad can be, so I'm happy to make mild silent as well. "If you're asleep, you're not in pain." Sounds good to me! 

I will be in ICU overnight then moved to the main floor by noon on Wednesday. Then I should be in the hospital another 3-4 nights. 

Brian will post updates on his and my Facebook pages and here as well tomorrow. I would ask that everyone please be patient and wait for him to post the update so he's not inundated with wonderful, loving, concerned requests. :) I should be able to at least post a thumbs-up 24 hours or so after surgery. 

So! I shall see you on the other side! Thank you for the many, many comments, notes, prayers, calls, texts, photos, everything. Y'all are the awesome, and I love you. Here's to my new year and new life! 

Journey to NY

So much has happened.  So, so much has happened.  Much of it was documented on my GoFundMe page, but it seems one cannot scroll back and read prior updates--I felt my blog here would be a great location to transition my story.  But first, I am going to C&P what has happened, starting with our arrival in New York:
Well, we're here! New York, Britvecs. Britvecs, New York. 

I'm a bit jet-lagged and tired overall, but wanted to update that we've made it here safely. Mercifully, the cabin pressure I had been dreading turned out to be mostly a non-issue. I felt pressure behind my ears and eyes more than anything, although as the flight went on I felt some mild pain. Interestingly, take off didn't bother me nearly as much as landing, although again, it wasn't bad. (Pilot-friend told later told me descent is much faster and the pressure changes more sudden; perhaps that's why.) I just noticed the pressure and pain were more significant, tiptoeing into the "Hey, this is annoying" territory but thankfully not going any further. 

Coolest thing about the flight? A classmate of mine from high school was one of the pilots! Scott had already offered us his buddy passes so we could fly for next to nothing, and then when he checked his schedule he realized he was piloting a LAX-JFK flight on the day we were planning to leave. There were enough empty seats on the flight that we were able to get on it. Whoo hoo! We were given a row to ourselves, which really helped us stretch out in the cramped conditions. I was even able to lie down halfway and rest when I needed to. 

Mega-bonus for plane-loving Brian was Scott gave us a tour of the cockpit, even letting Bri sit in the pilot's seat for a bit. Bri, Captain Stoic, was outright giddy (well, in a Brian sort of way). I was so thrilled for him. I'll attach photos of him in his seat at the end of this update. 

My head is tender today, but not bad, so we have made it the goal to go to at least one sightseeing spot before coming back to rest in the hotel. Yesterday was a long day and pushing it is unwise for me--so I shall not push my limits. I'll just likely brush up against them. ;) 

One thing I really, really want to do is visit the two hospitals my then-fifth graders wrote letters to immediately after 9/11. They were addressed to injured firefighters and police as well as to the doctors assisting them. One of the hospitals wrote the class back and said they were making a display of all the letters children of the United States were sending, and ever since, I've wanted to be able to see them. I know it's a shot in the dark, but I'll regret it if I don't at least try. 

I confess I have had cold feet as the surgery date approaches, doubting myself, doubting everything. But I am so exceedingly grateful for the Chiari community--one, who had surgery just four days ago, called me and was a tremendous encouragement. She said, repeatedly, that I was going to feel so much better. I can't imagine it--although, admittedly, part of me is afraid to imagine it because I fear being let down. But there is so much encouragement coming in, from friends, family, other patients of Dr. B, I'm becoming cautiously hopeful. 

Another former patient of Dr. B's is picking us up in a few to take us into the city (wonderful to have someone who knows the city help us navigate it!), so you can see, the Chiari community is taking good care of us. <3 

Thank you all once again for your continued support, in all its forms: prayers, donations, scheduling meals delivered to our home so my mother won't need to worry about cooking, providing meal giftcards for us while we're here in NY, and all the encouraging words via text, email, Facebook...the outpouring is absolutely beautiful. 

Much gratitude, much love.