Saturday

26 June 2022

20 Years Ago...

Two decades. It alternately feels much longer and just a while ago. But 20 years ago, right about this time of day, I was in a wicked amount of pain, despite the morphine I was given (over my I DON'T WANT TO STOP BREATHING objections.) One should expect that after getting a brain tumor removed, but my stupid asterisk likely (I don't really remember now) thought that I would avoid the screaming pain in favor of just a little ouchiness because they weren't sawing off the top part of my skull to get at it.

Nope, the neurosurgeon was only going to cut under my upper lip, lift part of my face off, and drill through my sinuses to get at the fairly large mass that had its sticky fingers wound around my pituitary gland. It was large enough and shaped oddly enough--a tendril working its way up the pituitray stalk toward the hypothalmus--that he didn't want to waste any time getting to it. What would have been a 4-5 month wait for surgery turned into 3 weeks, which was, honestly, terrifying.

Pushing other patients around to get at it was not great news, right?

Spoiler: I did not die.

I still have multiple issues related to the tumor. I will forever be on medication to control diabetes insipidus (which is not "diabetes" but more like "water diabetes." Like...I pee a lot. A lot of a lot without the meds, and I will drink every cold thing in sight), my thyroid is jacked, I overheat, I have blood sugar issues, cortisol issues, and everything combined is why my fear of flying is so exacerbated.

Cortisol and blood sugar problems can do nasty things to a person.

In any case, 20 years ago a very talented neuorsurgeon named Joseph Watson yanked that sucker out, and a couple weeks later called personally to tell me the good news: it was not only benign, but would never return. 

I'll live with the complications from having it in the first place, but in the grand scheme of things, that's not so bad.

Not too long after getting the good news, I started this blog...and this was my first post.

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The Thing Inside My Head
(eh, this is long...)

Okay... so I had this thing growing in my head. Initially I thought I was in menopause (and relished the idea), but in late March or early April I realized I was drinking an awful lot; it sort of crept up on me, varying degrees of thirst day after day, until I realized one morning that I was sucking down at least 64 ounces of anything cold and fluid I could get my hands on first thing every morning, and I kept drinking in massive quantities all day long. The end result of drinking so much is... well, you know.

What I didn't realize is the... well, you know... was causing the incredible thirst. Being so thirsty all the time spurred The Spouse Thingy into making me an appointment with our Primary Care Doc here at Travis AFB; he thought I might be diabetic.

The doc agreed with him; this was something that needed to be looked into. He made note of the fact that I was pretty sure I was in the throes of menopause (oh, come on, do I have to spell it out for you?! Something was missing!) and ordered a shitload of blood work to be done. The vampires at the lab surely loved this - they sucked out at least 5 tubes of blood and made me pee in this tiny, tiny cup (ok, a Big Gulp cup is tiny when you're drinking 3 gallons a day.)

My blood sugar came back at 95. Perfectly normal.
My prolactin level, however, came back at 118. Normal is less than 10.
And then there was this merry go round of drinking and peeing.
(“What did you do today?” “I peed.”)

Something was amiss. My doc, being fairly sharp, caught the implications right off the bat. The likely culprit to my problems was a pituitary tumor. He ordered an MRI - and I complied, as much as I didn't want to - and the evidence was right there. Glaring bright white against the black film of the MRI.

I had a tumor.
A brain tumor.
And it was big.

The MRI immediately went to the base hospital's neurosurgeon; she looked and measured, checked my lab values, looked some more, and decided this was an unusual tumor, unusual enough that she didn't want to handle it. She wanted me to see a civilian pituitary specialist. Someone who could look at the MRI and have a better idea what it might be. Someone who wouldn't just be using me for the value of experience. Between her efforts and the efforts of my primary care doc, and numerous inquiries by The Spouse Thingy, I got an appointment - fairly quickly, too - with a civilian specialist.

He took one look at the MRI and was brutally honest. He couldn't tell exactly what it was, either. It appeared to be cystic in nature, but it was not the ordinary pituitary adenoma. The only way to know for sure was to take it out.

Take it out.
Of my BRAIN.
Holy shit.

I did a lot of reading about pituitary tumors while I waited for this appointment; I knew how he would take it out (go in under the upper lip, drill through the sinuses to get to the pituitary gland, yank that sucker out, pack my sinuses, close up, no scar), and I knew that the surgery itself was becoming almost routine. But this was MY brain. My pituitary gland. My tumor.

I was terrified.

In between that visit and the day of surgery, I had every possible ill outcome running through my head. The least of which was the chance that I could come out of this blind - the optic nerve runs far too close to the pituitary for my taste. So do the carotid arteries. More than anything I wanted a feeling of serenity about this, some sign that it would be all right. Some sign that I wasn't seeing things for the last time. Something to tell me I would see my son's face again, see my husband. Something to tell me that my last breath was not going to be drawn on an operating table.

Over the three weeks between seeing the neurosurgeon and the scheduled surgery, people with pituitary tumors seemed to be coming out of the woodwork. They popped up in email, in casual conversations. Invariably, they had the same message. "I have one. I had one. I'm doing fine."

They were comforting, but this was still My Brain Tumor, and inside I was shaking like the proverbial leaf.

Two days before the surgery The Spouse Thingy and I had dinner at the BX Food Court. Normally we don't get the Chinese food there - it's not the greatest - but this night we did. Each dinner came with a fortune cookie; I never eat mine, I always give them to the Spouse Thingy. He shoved it towards me and told me I had to at least open it myself. 


He read his; it was typical fortune cookie nonsense. Scratch your palm and blink twice and all life’s richest will come your way.

I read mine: You will live a long and happy life.

I wanted to cry. It felt like the sign I'd been—literally—praying for.

The next day was dedicated to pre-operative appointments: getting a chest x-ray, more blood drawn, an EKG. As part of that appointment merry-go-round I was also given my scheduled surgery time.

First case of the day.
Be at the hospital at 5:30 a.m.

The hospital, UCD Medical Center, is in Sacramento. We live 50 miles away, at Travis AFB, which meant that we’d have to get up by 4 a.m. and be out on the road before 4:30. In the fricking morning!

Did I mention I am not a morning person?

I took my pillow with me and snoozed the ride up there (as opposed to puking up my toenails the entire ride, which is what I was sure I'd be doing). We checked in at 5:30, whereupon they handed me this tiny gown designed to allow me to moon the entire hospital, stuck us in a room where we waited for at least an hour for an OR escort (not as kinky as it sounds). I expected to be hurling large chunks across the room, but didn't.

By this point I think I was resigned to the idea that there was no escape. They had my clothes; where was I going to go with my backside shining like a bright white beacon off the shores of the California coast? They had me. I was doomed.

The OR escort finally arrived; I was put on a gurney and taken up to the recovery room, where The Spouse Thingy introduced me (a re-introduction, actually) to the Certified Registered Nurse Anesthetist he had hand-picked to knock me out and keep me knocked through the surgery. Nick (said CRNA) carefully explained what he would be doing to me, including all the things I would never remember, and then stuck an IV in my hand. While I laid there, contemplating the dark, dreary recovery room, the neurosurgeon (Spouse Thingy hand picked him, too) popped in to say hello (and promised, no, I won’t sneeze while I have my fingers in your brain); Nick gave me something through the IV (Versed, I think), and I was off to LaLa Land. I felt all warm and fuzzy... and then nothing.

Next thing I knew I was in the recovery room; someone sitting at my side (recovery room nurse, male, that's all I know) was urging me to breath. Deep breaths. More. That's good. The Spouse Thingy appeared at various points (I should point out that he moonlights at UCDMC and was allowed where family members normally are not); I recall hearing the nurse tell him that I'd been given morphine and my breathing rate was depressed, at 8-10 per minute.

My brain interpreted that as "She stopped breathing."

After about 3 hours (or so I'm told) I was finally taken to my room. I was transferred to a bed (don't ask me how, all I remember is a motor; I don't recall being moved), and while lying there half out of my head (but not in pain), I hear him.

The Yeller.

I couldn't tell exactly where he was on the floor, I could only hear his booming voice echoing through the hallways. HELP ME HELP ME! WHERE'S MY DOCTOR? I WANT TO GO! I was thinking "oh shut the phk up," but all I could do was moan. HELP ME! Gawwwddd.... At some point - it felt like minutes later but could have been hours - a nurse placed these THINGS on my legs. White THINGS with Velcro straps. The Spouse Thingy told me they were to massage my legs, and to keep me from developing blood clots.

My intelligent response: "Noooooooooooo."
Later he tells me I'm getting a roommate. "Nooooooooooo."
I whined a lot.

The Spouse Thingy stayed until at least 11:30 that night, making sure that I could reach my water and keeping my pitcher full. He stayed until he was sure that I could get the cup on my own, refill it using the pitcher on the table, and call for a nurse to bring more water when I needed it. The water was critical; the tumor had caused a condition called Diabetes Insipidus (the short of it - my body didn't make the natural anti-diuretic hormone, causing my kidneys to just let water flow through with no stops; I have a medication for it but they weren't giving it to me so they could see what would happen… at some point what happened was a burst collection bag and massive amounts of urine all over the floor) and I needed to be able to input as much as I was outputting (all hail the might catheter!) He had gotten nine pitchers of water for me throughout the day; that night I drank six more.

I was more coherent the next day; so was The Yeller. At some he must have been sedated, but I awoke to the familiar strains of LET ME OUT! HELP! Over and over... The Spouse Thingy appeared, followed shortly by the Physical Therapist Lady. They sat me up at the side of the bed, and then helped me stand; I was on my feet for only about a minute, which garnered me praise worthy of an Oscar Nominee (or at least a Gold Star), but it left me with the Headache From Hell.

The nurse said she would get me morphine; by this point I was half out of it and started crying, telling the Spouse Thingy "Noooooooooo... I don't want to stop breathing!" He tried to assure me it would be fine, my breathing rate might slow a little bit, but I kept whining "I don't want to stop breathing."

Okay.
I was terrified, really.

They gave me the morphine and I was determined to not fall back asleep; I was going to stay awake and BREATHE. Deep breaths. Numerous breaths. I would inhale as if I were trying to suck up the mother of all lines.

Right around lunchtime my son and the Spouse Thingy's parents showed up, finding me sitting up, a bowl of Jello in hand - fast asleep. When I did stir, I proclaimed that the Jello sucked, then went back to sleep, periodically waking up with a start, forcing myself to breathe.

Nope, I would not let the morphine do me in. I was going to breathe.

(Yes, all right, hindsight tells me that if I was waking up, I was breathing all along, but dammit, I was being proactive! I was breathing!)

Early evening came and the Spouse Thingy said he needed to get home early because The Boy had to work and couldn't feed the animals. My mature reaction?

"Nooooooo... I don't want to be alone."

So, being the Good Spouse Thingy that he is, he stayed a little longer and talked to my roommate's husband some.
This would be Mumbling Mary. She had disk fusion done, herrington rods inserted to stabilize her spine, and a nerve in her leg worked on. She was in some serious pain. They started her out with a boatload of narcotics, but they were giving her less than what she normally took for the pain. She was four year post-major-car-accident and existed on Percoset and Other Fun Drugs. A pain management team finally stopped by to assess her, doubled what she was getting, and that 2nd day she finally got some rest.

This was a good thing for Mary, but... it totally screwed up her sense of day and night, and left her high as a kite. That third day I was pretty coherent, sitting up, even walked the hall some (and got my nasal packing out - giant tampons they'd shoved into my sinuses), and she slept through most of it, occasionally waking to tell her husband to fix the clock already; she determined that it said 3:30 and she knew it was 8:30 (it was 1 p.m.). Around 9 p.m., just as I was falling asleep, she thought it was daytime. The nurses came in to turn her (an exercise in agony for poor Mumbling Mary) and she wanted to know where her husband was; they tried to explain that it was night time and he'd gone home, but she was sure they were lying. He couldn't have gone home - he didn't fix the clock!

I was *almost* asleep when The Yeller started back up. He was also throwing things, creating a general atmosphere of unpleasantness and construction zone noise - and I was finally able to determine that he was in the next room. He was screaming for the hospital administrator, calling his nurse 'Nurse Ratchet,' begging to leave, wanting to go home. Go anywhere. Mary, in the meantime, couldn't find her call button, so I pulled the curtain back and asked if she needed help. "Oh no, I just need to find this," and she was moving around so much I was afraid she'd hurt herself, so I buzzed the nurse from my bed.

After that Mary decided I was her Bestest Friend and proceeded to talk. And talk. And talk. The thing was, she wasn't really talking to me, she was carrying on conversations with the voices in her head. Around 4am she turned on her TV, and Wimbledon was playing. She muttered things like "Don't hit that tennis ball. You'll break the vase." She talked to everyone she knew, allllll night long.

It was too funny to be annoying.

No, what was annoying was the blood they wanted to draw from me, every six hours around the clock. After the first 2 days the veins in my right arm pretty much shut down and because of the IV they couldn't take blood out of my left. My arms had track marks worthy of a junkie, but they were getting no blood. Needle after needle... the blood just would not flow. I was bruised, sore, and still they wanted more blood.

Saturday morning I woke up, felt great, walked the hall without the aid of a walker, talked to an endocrinologist and a few surgical residents, whom all deemed me fit to go home. The ride home totally wiped me out. I got home and went to bed, and for the most part stayed there for a couple more days. The fatigue clung to me for almost a week. So did the swollen face. Initially I looked like I'd gone a round or two with Mike Tyson; after a few days I only looked like a TeleTubby.
Tinky Winky.

I had survived. The surgeon didn't sneeze with his fingers in my brain. I didn't go blind. He got it all. All we could do from that point was to wait for the pathology report, and hope that I wasn't one of the Very Rare People to get pituitary cancer.
I wasn't.

I am one of the Very Rare People to get lymphocytic hypophysitis. Very rare. Extremely rare.

Extremely lucky.

It's a long term that basically means, because I had the tumor removed, I'm cured. It probably won't come back. I won't need further treatments, other than the occasional MRI, just in case.

So, I had this brain thingy.
It's gone now.
But it was proof, after all, that I have a brain.
Life is good.


Spouse Thingy and I moved to Ohio just 5 or 6 weeks after the surgery. I have some complications as a result of the tumor—I’ll have Diabetes Insipidus for the rest of my life, and I don’t produce some key hormones, but all that has been successfully replaced by medications.

Life really is good.

 ♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦

 It's still really good, and y'all are part of the reasons why.

Wednesday

25 May 2022

I would not have a child today.

If I were young enough, no matter how much I wanted to, I would not have one.

I know the pain of infertility; I know the disappointment of not having that child. I also know the impotence of something happening to one’s child, happening right next to them. I know that stab of crying why without having an answer. I also know I was so very lucky in that the outcome was landed in my favor, and I went home with my baby.

He was right next to me. Someone tried to run off with him. I have had nightmares about that since it happened almost 39 years ago. I feel the panic, the nausea, and the pain…but I got to take my baby home.

In the years since, I’ve felt he was safe. I allowed him to go outside and play. I sent him to school without worrying that the worst would happen; I never felt that someone with awful intentions would breach the school and hurt him. I had faith that the adults in charge could protect him.

But now?

Every day, putting him on a school bus, I would worry. Dropping him off, I would worry. Is this the school in someone’s sights? Is this the day?

When the Boy was growing up, I always felt like I could keep him safe. He was damn near stolen from me, and yet I felt I could keep him safe. I always felt the schools could keep him safe.

I no longer feel that way.

Our kids are not safe. No matter how much lip service we pay, citing stats and theoretical likelihoods…they are no longer safe.

I would not bring a life into this world the way it is now. It's more than this; the reasons are many, but right now this is at the top.

Our leaders are not willing to do the hard things necessary to stop the violence; too many people are so attached to their guns and shout about the second amendment, they vote for the people who are happy to take money from the gun lobbies, and for what?

Because their guns are more important than our kids?

Every time this happens, every time there’s a school shooting—yesterday’s was #27 this year, and we’re not even 6 months along—some of the first reactions are “Well, now the libs are gonna try to take our guns.” Kids die, and they’re more worried that some ethereal liberal deity will swoop down and pull from their mostly untrained hands weapons that they don’t really need. That’s not an exaggeration; Ted Cruz immediately began spouting about how the left would use yesterday’s shooting as an excuse to take away guns. There were posts all over social media spouting rhetoric: well, this is why I always carry; no one’s gonna do anything like that while I’m around.

Yes, they will. And you won’t be able to stop them. Your notion of the good guy with the gun fails to take into account that they’re going to have a bigger gun, don’t care about you or your life, and will probably enjoy taking your life. It especially doesn’t take into account the fact that once law enforcement arrives on scene, they won’t know that you’re the so-called good guy. They’ll just see someone with a gun. And they’ll do their jobs, react as if you’re the bad guy with the gun. They don’t have a choice.

It’s only been a day, and the outrage over just the idea that someone might take their guns has people shoving aside the fact that 21 people are dead, 18 of them children. The grumbling is so loud that they’re not listening, but for once, maybe, shut up and pay attention to something other than yourself.

No one is coming for your guns. The “libs” just want some common sense. Registration of weapons. Training. Testing. All those things you’re willing to do in order to get a driver’s license.

A waiting period. No one needs a gun right then and there. If you can’t wait, you probably shouldn’t get it. And no, I don’t care if you feel like you need to be able to pop into Guns & Ammo to buy a rifle for that last minute hunting trip. Plan better. That’s on you.

If you’re one of those who clings to the notion that the left just wants to take what’s yours, if you’re more upset at the idea of losing those things over the deaths of people, your unwillingness to accept some gun control tells me so much about you.

You want armed guards in school before you’ll accept gun control. You want to arm teachers before accepting gun control.

You want to turn our schools into prisons before being willing to do the most basic things to protect those kids.

But we’re the United States of America and we have rights!

I’m guessing that won’t be for much longer.

I honestly don’t think that a child born in the U.S. today will be a citizen of the U.S. in twenty years. We’re imploding on so many levels, we’re regressing, we’re racist as fuck, we’re angry and lashing out, and gun violence is one of the symptoms.

We’re not safe.

Our kids are not safe.

And we’ve done this to ourselves.

 

Thursday

19 May 2022

Ok, wow, I did not realize that I’d gone so long without posting anything here…which goes to show how much I talked about my cats. Without those furballs, I don’t seem to have a lot to contribute, unless you want me to geek out over all the new Star Trek choices or Doctor Who. Because I can do that; especially with the new Doctor announcement, I can squeal a lot.

I can squeal over what I’m writing…I’m about 150 pages into a Wick book (which has been surprisingly difficult to write without Max sitting here meowing at me nonstop; I’ve scrapped hundreds of pages in the last 6 months but I’m in a groove now.) And when I’ve got the vomit draft done, the first draft will debut online first, on its own site. Will I monetize that, when I’ve never done that with a blog before?

Probably, even if its just a tip jar. Max’s books are how we generate our annual charity donations, and last year, without a new book, it was a bit…slim…by the end of the year. The Spouse Thingy made up the difference for the most part, but still. That was something I felt helped me make a contribution, and I’d like to continue it.

Other book in the works is the cycling book. I’m nowhere near as far along with it, but that’s fine. I’ve done some long-term test rides on a couple of bikes and have notes; the cargo bike was terrific but I sold it to make room for the next one, and it’s a keeper.

Today I took delivery on 2 folding electric bikes, and I’ll ride them over the summer…but not solely because book or not, I have a 300 mile goal in September for the Great Cycle Challenge and I can’t see doing it on one of these.

By the time I got them put together (10 minutes each bike, tops, it was mostly unfolding the frames) and charged, it was 90 degrees outside. We opted for a very short test ride to the little park nearby, where we rode around in circles for a bit. Only 1.5 miles total, but I can already say that I am too tall to ride this for more than 8-10 miles, which is fine because I suspect that’s as long as the battery will last.

It could turn out to be a fun in-town or take-to-a lake kind of bike, or for someone with a short commute to work. But, we’ll see. It’s hard to tell anything in 1.5 miles.

Well, it was easy to tell I did not get the clamp on the seat post tight enough, as evidenced by the seat sinking all the way in when I sat on it. That was slightly undignified. Would have been funny if it had happened slowly, while in motion, leaving me to wonder WTF was happening.

Too many tacos, Karen, that’s what was happening.

As we’re rolling into summer, that’s what I’ll be doing: writing and riding, often at the same time because that’s how my brain works. I get the mental work out of the way when I’m on the bike, and get the words written down when I get home. And sometimes, they even match up. Sometimes. More often it’s: ride, come up with a sterling narrative—a BRILLIANT narrative, one destined to ear awards—get home, sit down, and that’s when the drooling starts because my brain just nopes right out of there.

At least my brain is doing something.

Shuddup.