T-plus three days

 It feels really surreal. Maybe that's the drugs?

I struggled with "what if I'm doing the wrong thing" all the way up until I was signing the final consent to treatment, gowned and IV'd. Some part of me is still wondering that, but I realize that's because I'm in a new and different kind of pain so my instinct is to mentally downgrade the devil you know, so to speak. (Also say hello to the high res versions of my bone spurs. It looks like they’d been shopping at hot topic for punk spikes.)

Yeah, I'm in pain. It's to be expected really. I have six screws, a titanium plate, and two chunks of cadaver femur embedded in my neck now. (And a bunch of absorbable sutures)

It took three tries for them to seat the first IV, and once I had signed my consent to treatment, I asked for something for the anxiety. I'd been crying behind my mask on and off since arriving two hours early (as directed) and I was exhausted. My last memory was around 1pm, when of a member of the anaesthesia team holding a large slightly yellowed cylinder and tapping it into the hard-won IV port on top of my right hand. The surgery was scheduled for 12:23pm, to last for about 3.5 hours. 

I have some vague recollections of coming out of anaesthesia and talking to one of the surgical team about 18th century gelatin, and carnivorous plants, while they tried to stick a bedpan under me. I was lucid enough to know that wasn't going to work and ask for a catheter, which they were surprised by but assented to ("huh, she didn't even flinch"). I know I called Martin on a phone at some point but I can't remember a word of what I said to him. I woke up a second time in a recovery bed, some time around 9:45pm, visiting hours already over. 

Covid has been surging around the world recently, so it wasn't surprising to me that the promised orthopedic ICU bed didn't materialize immediately as I exited surgery. But hours passed, and more gurney beds with highly-drugged individuals started to collect in that room as no new beds became available. Around 12:30am the nurses came to shut down the recovery ward, so those of us still waiting were rolled back to the capacious pre-op ward, where we'd donned the gowns and IVs and done final signatures before our surgeries.  

So we waited. And waited. And had some jello and crackers, and water, and waited more. And some time around 4am, I started to feel nauseated. I had just undergone a blood draw (because I guess they have to do those every 6 hours or something for monitoring?) in my foot (because, as I found out later, literally every other part of my body that had accessible veins had been tapped) when I started to get tunnel vision and cold sweats. I woke up with a nurse screaming "help help" out into the ward, my toes curled over the bar at the end of my bed, another nurse holding me down as I arched, and a third working a suction tube into my mouth as I vomited and coughed. "Do you know where you are?!" "The hospital?" I coughed and choked as they sat me up, an expelled another liter of fluid (?!?!) before the nausea disappeared. I collapsed into bed as they stripped me and wiped me down, tucked me into a fresh gown and fresh socks and fresh blankets and put an anti-nausea patch behind my left ear. I slept under their watchful eyes, exhausted. 

And that's where I woke up again, about 11am, still not in my ICU bed, but in good spirits. I sat up, I got more blood drawn, they took my vitals, I started to eat again. My surgeon came around to look at me, and over the protests of the nurses got me up out of bed and into a chair to eat. A few minutes after he'd left, satisfied that I was mobile and on the mend, the tunnel vision came back. I had enough time to gasp "I'm blacking out" before it was on me again. I apparently had a vagal seizure that lasted about 8 seconds, scared the crap out of the nurses and the other patient still waiting for a bed, and knocked me off the chair. I got to use this super interesting device called a "Sara Stedy" to get from the floor back onto my bed, and the nurse who'd been looking after me the whole time sent a stream of almost-profanity into my surgeon's voicemail box. A few specialists visited while I was exhaustedly snoozing again, but after some tests we decided it wasn't an epileptic episode, but it could've been due to some of the many drugs they had me on. (My guess was gabapentin, and they said that was possible.) 

After those two episodes I guess I got a priority bump, because around 3pm an ICU bed came free for me and I left the pre-op corner with thanks for the nurse who'd been watching me like a hawk, and the other lady who was rooting for me.  The room was private, which surprised me, and had a great view of the trees of Mount Sutro. And after the loud, dim, busy corner of the pre-op ward, it was heavenly. After that I progressed fairly quickly - able to get out of bed, get to the restroom, and walk a bit with minimal assistance. Martin came to visit me, and I ordered dinner and snoozed a bit, then drifted off to sleep. Two more blood tests later, and an unknown number of shift changes and resident visits, I was ready to go home.

This is only day one home, but I can see this is going to be a long road. I already don't like this cervical collar, and I'm worried that it's also possibly too short for me. My hands, arms, and feet are covered in bruises from failed IV attempts, and I'm still picking ECG pad adhesive off my torso. My neck is bruised and slightly swollen, and I'm afraid to look at what's under the dressings. But I got to have a shower, and I put in my contact lenses, and that makes a huge difference to help me feel human again. I can't brush my own hair yet, and the drugs make me too woozy to walk far on my own, and swallowing is difficult and doesn't feel natural again yet. I'm still coughing up aspirated apple juice phlegm, apparently sleeping in the cervical collar makes me snore, and I've got some allergy/post-nasal drip/sinus infection thing cooking on top of it all. 

But here's to hoping that this pain subsides quickly, and I'm quickly back on my feet and better than I was before. I have a four week LOA from work, so it feels like most of what I need to do is sleep and drink water, and stay away from the surging coronavirus.

Oh, and alllllllll my Christmas shopping. x_x

Self-talk

T-minus three days to surgery. I keep waiting for some Sign(tm) that I'm doing the right thing, and in the absence of such I keep second- and third-guessing myself. I am in enough pain that I have lost the ability to reason about the pain; my brain keeps going back to the following: 1) Did I do enough to try to fix this without surgery? 2) Is my pain really *that* bad? Aren't there people worse off than me here? 3) Since this happened to me, don't I deserve to suffer? 4) What if it goes wrong?

As a mental health exercise, let me break this down for myself and see if it helps.

1) Yes. This first happened in March of 2019 and you toughed it out for a full month before seeking help, then you spent four more months getting back to 99% functionality, all without knowing that this was going to happen again. There were two more levels waiting to go. 

2) Yes, and this is bullshit medical-care-rationing thinking. You are in pain and thus you deserve treatment; you don't need to compare your pain to anyone else to justify getting it. You're having trouble with word-finding, you're having trouble with names, and focus and concentration are beyond you. These are all signs that things aren't going to get better on their own. Sure there are kids starving in Sudan or something, but nothing practical you can do is going to change that, and putting everyone else who suffers before your own care is not actually helping them or you. This is a trauma response. Putting others before yourself here will not make you a better person, win you approval or accolades from a distant theoretical authority.

3) No. This is the body you were granted for this incarnation. Part of the experience you're having is that of watching Time change it. Remember how you felt exactly this way when you got your first crown molar? How ashamed and grief-stricken you were that you couldn't keep your teeth in exactly the state they were when they first cut through your gums? And now it's nothing? You won't ever be the same, but Time was going to ensure that for you anyway. It's just not quite the not-the-same as you'd originally envisioned, and while it's natural given your upbringing to grieve that somewhat, don't let naturalistic fallacy swallow you whole. 

4) Even if it goes wrong, it will help. UCSF is world renowned for their Spine Center, and they're where everyone else goes when some other doctor fucks up their procedure. If Something Happens you'll be under the best possible care to correct it, even if it means more surgery. You're (relatively) young, with no serious underlying health conditions, and should heal quickly. You have a team of professionals on your side, and (gross that I have to write this, thanks 'Murica) the money to pay for their care. You've been in pain for about the same time that they expect you to need to get back to normal; that's more than enough time sacrificed on the altar of needless-pain.

This body is my vessel and I need to heave down occasionally. I will feel joy again, someday.

Real Fear

I am so scared.

After much wrangling with insurance, we're doing a 2-level fusion at UCSF. Anthem wouldn't approve a synthetic disc along with the fusion, so we're doing less to spare my mobility, on the promise they made that if I still have pain they'll approve a disc in a second operation. December 15th is my surgery day. That's a week away. I have an LOA set up with work. I have all the moving parts figured out and scheduling bits in place. And I am scared.

I am so scared I've been randomly breaking down into sobs, for minutes at a time. Hyperventilating, ugly cry, scared. Started turning on music when it happens so I don't freak out the downstairs neighbors. We're at four times today. Nothing like snapping-to and finding you've been sobbing on the kitchen floor in the middle of the day while your lunch cooks to make you doubt your own sanity.

What if I'm doing the wrong thing? What if it doesn't work? There's so much that's out of my hands.

I have never been scared on this animal, bodily level. I'm sitting in here piloting this meat suit through daily tasks while it shakes and sobs and I have to tell it to blink more so I can see what I'm trying to do and I am just... is this still a healthy level of compartmentalization? Am I doing this wrong? Is this breaking me? (Was I broken beforehand and just hadn't quite noticed?)

I'm reading through the pre-surgical instructions and putting them on the calendar and I can't stop crying. 

I can't imagine this hurting less. I am grieving the loss of my, I'll admit to this vanity, my pretty neck and collarbones. I'm scared that on top of this, it won't help - I'll still be in pain (in more, different pain) and will have to get a second surgery anyway. More scarring, more pain, more loss of the OEM parts I had.

And then some part of me recognizes that I am *in* pain right now, and despite my brain's insistence that I'm not in real pain, not really, I actually am, and that's why this (including the random crying jags) is happening and that's why I need this surgery. 

So I took one of my baby tramadol and I am going to go to sleep now.

No going back

 I've been consuming a lot of historical fiction recently, discussing it with other nerds, and all of it points to one thing:

You cannot heal to-first-principles what has been utterly broken. You cannot un-burn a forest. But you can use the ashes as fertilizer to grow something better.

We were talking about Babylon Berlin (which is beautiful and dark and amazingly well done, well worth watching),  and the fall of the Weimar Republic, and I think it has some strong messages for the incoming administration. 

We can immediately reverse policies, but if we blindly put things back to how they were, given the damages done in the world in the intervening time we're going to find perverse incentives in record time and it'll be egg on the face of everyone involved. We should be taking this time to see what stagnant patterns have been torn down by this disaster of a government, of a pandemic, of a year, and see what we can build back, better.

I am heartened that that's the actual campaign title of the incoming Biden administration. We cannot make America great "again" for it was never great. But we can take the things we've lost and use them to fertilize a greater good and a greater equality.

The world has changed

All I knew
This morning when I woke
Is I know something now  
Know something now I didn't before 

I woke this morning to the sound of a conch shell somewhere on the block, blasting three times. In prayer or thankfulness, I believe. It wasn't until a half an hour later when we heard honking and cheers that we woke up enough to roll over and look at our phones and read the happy news.

It's like rising from beneath a suffocating load, after four years.

In November of 2016, I alighted from Caltrain into the arms of someone who did not understand why I was so upset, but who held me and told me (wrongly) that everything would be okay. Even my LJ ramblings from the inauguration show how terribly bad things had got so very very quickly.

Now I feel like I need to make a to do list for him, for them, for the world, of all of the things that need to be fixed and set right.

We need more voter re-enfranchisement; protected voting rights; to un-gerrymander. (This last one we could legislate algorithmically, I feel.) We need to write down and make a legal requirement all the niceties of presidential behavior that we took for granted: they must disclose their taxes, they must divest themselves of their business assets, they must have a transition plan and team, they cannot appoint cabinet members with a clear conflict of interest, they cannot appoint supreme court judges with less than six months left in the term, they cannot. We need to undo four years of batshit insane executive orders: roll back halts on diversity training, stop making statements about the preferred architecture of federal buildings, disallow ridiculous tariff changes and begin negotiations with our trade partners. We need to put into constitutional law some of the items that have been otherwise only legal precedents - marriage should be a right not a forbearance. We need to fight COVID, rejoin the Paris Agreement, tackle the giant holes punched in our government and begin to mend our relationships with the rest of the world. We also need to mend our relationships with the rest of America - stop demonizing the red states and their voters, and make sure that their concerns are heard.

Every item that concerns me, there's a plank for that. (But the anxious doer in me is still making and revising to do lists that nobody in power will ever see.)

But... it's a welcome change from the nonstop grind of pain and fear of the last four years.

---

In other news, the third time was the charm. My appointment at UCSF's Spine Center with Dr. Berven left me with a sense of relief so intense I cried in the office (and alarmed the poor student who'd been working with me - she thought I sounded so in control of everything, hearing that I was looking forward to a surcease of intense pain was a surprise. I'll take it as a compliment.) We're going to try to get my insurance to approve a hybrid approach: two titanium discs between C4-C5 and C5-C6, and a single-disc fusion between C6-C7. This means we're putting a plate only between the vertebra that are functionally between my collarbones, and which normally have the least range of motion. The hope is that, if approved, this approach means that I'll have almost-normal range of motion when we're done.

The surgery pre-op reading is terrifying. I guess I need to write a will beforehand? Any neck surgery is scary but damn, "we could nick your carotid artery and you might die" is... eye opening. There's always the possibility of nerve damage, but also damage to the tendons, to the vocal cords, the trachea and esophagus - difficulty speaking, breathing, swallowing. There's a possibility that it goes poorly, and that I come back in six months, a year, five years, to get it re-done. There's a possibility that it doesn't work, and they have to do something else. I'm scared, but also... I know myself enough to know that I'm getting bored at my current employer, and if I jump I may not have insurance, or good insurance, where I land. I'd like to have this taken care of.

Some part of me feels like I ought to get Lasik after, and just be the best modern cyborg miracle I can be.

Keep walking

 My step-grandfather passed away peacefully and unexpectedly in his sleep on October 21st. We weren't close, and he wasn't functionally with us the last eight years or so. I have not really known what to say that isn't condescending, trite, or worse than saying nothing at all, so after two glasses of wine I wrote that in a card with some memories and stuck it in an envelope addressed to my grandmother. 

I think my disc is re-absorbing itself, because my pain is way waaay down. I mean, not gone, but down. I still have a lot of pain sleeping, and I don't have my full range of motion or feeling in my thumb back. But it's much more predictable and my shoulder hurts a lot less.

I mean, it's either that I'm getting better, or I'm getting inured to the pain?

Either way, I'm thinking about maybe trying some small yoga and maybe trying to get back to sewing a bit?

I've been waiting for over a week for the CPMC neurologist to even get back to me; at this point I'm seeking other resources. I left a message at UCSF, because I don't want to be pressured into what is essentially a life-altering surgery. That said, I'm at my Out-of-Pocket maximum for the year right now - it's worth doing while I've got the option and have coverage, especially given the horrifying prospects for health care if Things Go Poorly in the upcoming election. \

I've got a two page Google Doc of questions for my follow-up with the non-dud doctor, but I'm still super scared about this. Any time you have a surgery where the disclaimers start with "we could nick your vocal cords and you might never speak again, we might fuse your neck so that it's permanently pinching a nerve, and also we could nick your carotid artery while we’re dicking around in there and you could DIE." I keep seeing the xrays with two screws per vertebra and it just makes me cringe.

Work is going. I feel so scattered right now, it's nice to have something that's just sort of cooking along there without my help. It would be really nice if just one of the many things that're taking up brain space would resolve - the DPO sale, the acquisition, health stuff, therapy, covid, the election, the back stairs...

Regret

The orthopedist was brisk and bright and professional, and told me in no uncertain terms that he didn't think any of my pain was from an orthopedic injury (thank god?) but that it was more than likely all from my neck. I told him I was seeing a neurologist in two hours, and he asked if I was seeing someone in his practice. I told him no, and fished the ream of printed forms out of my bag to catch the name of the guy I was seeing. The orthopedist hmm'd, but would not say more, but left me with the names of three other neurologists, including one in his own practice.

But he was kind, and he said (probably noticing the wide eyes and the dampness at the edge of my mask) that I was going to be okay, and that I would get better. I cried a lot while he was printing out those alternate referrals. Was it the early hour? The prednisone? Was it just finally having someone who knew what the fuck was happening? I don't know. But it was a nice bulwark against what came next.

I expected it really. The ream of poorly photocopied forms was a clue.

When I walked in to the neurologists office, an 8x8 space stuffed with chairs, there were already four people present. And although I'd filled out literally every form in advance and hand carried my CD with the MRIs, the check in process was as painful as possible. Insanely unprofessional. I was then left in an exam room for 45 minutes - more than long enough to note the slovenly and utterly unhygenic surroundings.

The doctor, when he arrived, looked bored or drunk or possibly both. And although he'd had, presumably, 45 minutes to look at my file and MRIs, he asked me a bunch of vague and demanding questions, including if I was married, then with a noise of disgust told me to put on the paper gowns for the exam. I've never seen a more shambolic excuse of an exam. He was bored, he was just going through the motions, he literally tossed the exam implements on the table once he'd used them, then picked up my clothes to sit on the chair closer to the exam table and tell me that he was recommending an epidural but that at some point I was going to need surgery.

I could not nope out of there hard enough. By the afternoon I had one more appointment (Monday) and a new referral for someone in a more professional organization, to try to find out what my options are. So, that's a few days I've lost, but I also feel a lot more in control of what's going on.

The chiropractor yesterday was also helpful - she said that the MRI photos I showed were definitely bad, but not even the worst she'd seen. So there's pain still, but there's also hope. And now I mostly am filled with regret for not paying more attention to posture in all these years at the computer.