Okay, I'm going to write the whole thing out. This is going to be long! But with lots of badly focused phone camera pictures, so you can see it all.
I had been having tailbone pain for a couple of years, since I was pregnant with Colin. I saw an orthopedist and he prescribed pain killers to help me deal with the daily discomfort. I took them as needed, careful to not take too much and make myself a zombie. Then I was having a rough time sleeping and my family doctor prescribed sleeping pills to help me fall and stay asleep. This is background for what happened next.
On a Thursday in early May (it was May 5th), I noticed at recess in the afternoon that I was seeing double. There was a girl in a bright pink shirt on the playground at school, and I was seeing 2 of her. I was confused, but I slept on it hoping it was a one-time thing. Nope. The next day it was still there. I took one of my pain killers that morning, but didn't take any more after that. I thought it might be a side effect of the medication. Scott did some research online and found that double vision could be a side effect of the sleeping pills I'd been taking, so that Saturday was the last time I took any of those. I called my family doctor and went to see her on Monday. Double vision is not something I was going to ignore. Driving was unsafe - I had to close one eye as I drove to see only one of everything. My doctor said to wait it out that week to see if quitting the medications I'd been taking would even things out. By Friday, though, it wasn't any better. If anything, it was worse. Looking back now, I realize I'd been having some terrible headaches. I got dizzy from bending over. I was constantly exhausted. My doctor called me back Friday after I called with the update that things were not getting better. She had scheduled a CT scan for me at a place here in town, and I had to be there after work. Scott picked up the kids from the babysitter and my parents were driving in from Dallas to see Gavin's t-ball game the next day.
I went to the radiology place and they did the head CT. I waited for my doctor to see the scans, and then they told me she was on the phone to talk to me. When I heard the words "we see a small mass" my eyes teared up and the panic started, but I had to keep myself calm to hear what to do next. She told me to pack a bag and plan for a few days. I was to head to the ER and Dr. Kim would be expecting me (neurosurgeon). Wow. I went to my car in the parking lot and called Scott, trying to tell him without losing it. My parents had arrived and pizza was ordered for dinner, so I just needed to pull it together enough for the drive home. Thank goodness I keep tissues in the car.
After dinner, I packed a bag and Scott and I headed to the ER at North Austin Medical Center. My parents stayed home with the boys and got them into bed. Knowing they were taken care of was such a relief for me. We checked in at the ER and waited for a while, but then I was called back and they did all the routine triage stuff. I was put in an ER room, they put in an IV, and started me on steriods to reduce swelling. Everyone around me seemed to know what was going on in my head except for me. The nurse had talked to Dr. Kim, but I hadn't, and it was frustrating to not know what I was facing. We were in the ER for a while, but finally Dr. Kim came into the room. He explained that there was a mass in my brain, where it was located, and that we would be going to surgery on Tuesday. I was going to be admitted and moved upstairs once a room was available.
I was finally admitted and moved to a room, and the nurses took such good care of me. Nurses do so much. They are amazing.
On Saturday I had an MRI of my head and also of my entire spine. Knowing I'd been experiencing tailbone pain, they wanted to be certain that there wasn't a tumor on my spine. As I was being wheeled back to my room from the MRI we passed Dr. Kim in the hallway and he said he'd come up to discuss the scans with me later that day. Saturday evening he came to my room and took me to a computer at the nurse's station to look at the MRI. Holy cow, there was a 6cm x 4cm tumor in my head. It was located behind my right eye, and apparently was putting pressure on the optical nerve or something of the sort which was causing the blasted double vision. Luckily, it had a good margin (outline), and it wasn't reaching fingers out into other parts of the brain. Dr. Kim told me that we needed to do a cerebral angiogram (where they inject dye to see the vascular systems) so that he could know what kinds of vascular issues he'd be facing in surgery - that would be on Sunday. No eating after midnight!
So, Sunday morning I chatted with visitors but didn't eat (boo! hiss!). At about 11? noon? they wheeled me to the angiogram. They injected dye in the groin area and watched it on monitors (I could see it, it was so interesting to watch on the screen). Afterwards he used some sort of angioseal where he'd put the dye in the artery, and because of it I had to lay completely flat for several hours after the procedure. Ever tried eating a BLT sandwich laying completely flat? Oh, so many crumbs fell into my neck and onto the bed!
Monday was spent playing the waiting game. The boys came up to see me after I took a shower, and the IV in my elbow bled a little under the clear plastic tape that was over it. Gavin took one look at that and shrank back from me. The look on his face broke my heart. Colin barreled over and buried his face in my lap. Hospital beds that move are great bribery for kids to come sit next to Mommy. They thought it was the coolest toy!
Tuesday - surgery was scheduled for the morning, so they came pretty early to get me prepped. I got back into the oh-so-fashionable hospital dress and took out my contacts, then they wheeled me down to the prep room. This first picture is of me and Scott right before they gave me a cocktail that knocked me out almost instantly.
Really - they put it in my IV, and I felt like I blinked. I said, "I don't think I can do this," and they told me, "Annie, you're out of surgery." That was surreal.
You can see the iodine or whatever they use to sterilize my face. It's a good color on me, right? I believe these next pictures are me right out of surgery, I don't know if the breathing tube came out after I was in ICU or before, when I woke up it was gone and I could talk. Thank goodness - y'all know me, I have to be able to talk!
This picture shows the totally swollen shut eye. That was so uncomfortable! And don't you love the bandages? The nurse in ICU called it the "soap opera bandage."
Wearing glasses was difficult with the bandage on my head! As blind as I am, I really needed to have them. After surgery, things smelled different. They still do sometimes. The boys' shampoo smells differently to me, now, and it's Johnson's Baby Shampoo. That has been hard to wrap my mind around. Some things (like Quaker Oatmeal Squares cereal) taste differently too. Weird.
Still in ICU (you can see the sliding doors in the next picture). They almost never remembered to close that door all the way! I swear, ICU nurses had a party at all hours of the day and night. They are a chatty bunch! Thank goodness for Will, he made me a milkshake when I was ready to try eating something. It was so very tasty. With the swelling and bruising, I wasn't able to open my mouth very widely, and chewing hurt. So a milkshake was heaven.
Here you can see the ponytail sticking up from the top of the bandages. Oh man, wait until you see how crazy that ponytail got after the bandages came off!
I'm awake here! I spent a good portion of my time in the ICU asleep. Until someone would come in to check my temperature, or the blood pressure cuff around my arm would randomly inflate and check my blood pressure, or they brought more medication. My right eye is actually a bit open, the swelling is going down really quickly. Hooray!
Dr. Kim came to check up on me in the ICU and he removed my soap opera bandage to take a look at everything underneath. This next picture shows just exactly why neurosurgeons do not make good hair dressers.
I was moved upstairs to a room 2 doors down from my first room on Thursday. Oh, it was so nice to be out of the ICU! I took my first peek at myself in the mirror when I got up to go pee for the first time myself (in the ICU I had a catheter, sorry, TMI). I was pleasantly surprised at how normal I looked, because I felt like I looked like the Michelin man on the right side of my face. Oh, but the hair! Out of control.
On Saturday my mom and Scott brought the boys up to see me for the first time since Monday. I was terrified that the boys were going to be afraid of me.
Gavin had freaked out with the IV that first time, a
nd by Saturday I'd had a gazillion IVs as well as attempted IVs that didn't work out, so my forearms were bruised to high heaven. My veins had decided they'd had enough. So, before the boys arrived I put a bandana on over my crazy bandage and wild hair. When they got there, I asked if they wanted pirate bandanas as well. Duh, of course, Mom! So we all got dolled up and posed for a picture.
Gavin got tired of wearing his, and he took it off. I asked if he wanted to see what my head looked like under mine, and he said he did. I took off my bandana and bent down for him to look. He was fascinated and (thankfully) not afraid or freaked out. Whew.
Colin really liked pushing buttons on the bed. "I push button, Mommy." Alright, buddy, have fun!
The nurses removed my white bandage strip after they realized it was sitting about an inch off of my head! They were putting neosporin on the incision/stitches, and wow did they really goop the stuff on.
Here is a gory look at the incision site up close. I guess we can be thankful it's a blurry camera phone picture, right?
And here is the view from the side. The stitches go right down to my ear. Is that some messy hair or what?? When I took the pony tail out at home to take a shower and wash the hair on the back of my head, the pony tail stayed even without the rubber band. Ew!
I feel like a brand new person. I have energy (though it gets used up quickly) and I feel more alive. I look back on the past year or so, and I wasn't myself. I wasn't the me I wanted to be. I was crankier, I was tired, I was removed from my family and friends. Now I want to be a part of things, I don't look for ways to get out of emptying the dishwasher or doing laundry, I want to live my life. Maybe part of that comes from having a major life scare, but really it's more about attitude here and I feel like now I have a positive one. This is a feeling I'm happy to hold on to.
People have been more kind than I can say during this whole ordeal. Folks from school have signed up to bring us dinners, and friends have helped out in so many ways it's unreal. Today, my team at school met on Memorial Day, a holiday, to move all my things out of my current classroom into the new room I'll be in next year. All my junk, it was moved in ONE HOUR! I love my OTE family.
The tumor was initially called a meningioma, but the pathologist called back and said, no, it's actually something different and more rare, hypermeninparisitoma maybe? Scott knows the name of it, I must have misheard the doctor on the phone because what I wrote down that he said doesn't exist anywhere that I've found. We go tomorrow to get my stitches out (yay!!!) and learn more about the tumor. I have an appointment in mid-June with an oncologist to discuss it and look at possible other treatments, see if radiation will be necessary, all that fun stuff. Meanwhile, life goes on.
