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