If you'd like to read more of my adult ependymoma story, you can find part one here and part two here.
We were at the hospital at o'dark thirty. Austin, my sister in law, my Uncle Mike (who's a surgeon himself), and my parents all met up to wait it out. I gave everyone a hug in the surgical waiting room, except Austin who was able to come back to pre-op with me. Pre-op was the only place I regretted shaving my head- they made me take my hat off and it is COLD without hair!
The nurse got my vitals, made me take a pregnancy test (Just in case!), and then the residents came in to see me, which was great because one of the residents was Hasan, who I knew from high school. We weren't ever friends, really, but having him smile and hold my hand and remind me that Dr. Nayar was a great surgeon was very reassuring. Then the anesthesiology residents came in and went over all the information they'd gone over in pre-op on Friday and then the doctors came. First anesthesiology, who I can't say I remember, but he's my favorite person on earth because I successfully didn't feel a darn thing ;) then Dr. Nayar came and looked only slightly surprised by my bald head when he came to mark me. While we waited, Austin and I joked about whether he had a catch phrase like McDreamy from Grey's Anatomy ("It's a beautiful day to save lives, people!" or something like that). Then the nurse came in to give me a shot of "something to keep you calm, although you don't appear to need it". I really didn't need it- I was either going to wake up and give Jesus a fist-bump, or I was going to wake up and get better. I obviously didn't want to leave three small children, but I had confidence that God had a plan for my family, and me worrying about it wasn't going to change how it worked out.
I kissed Austin, and I almost cried then, just because it was an emotional moment, but we both smiled instead. The OR was crowded and nothing at all like an OR on TV. I wish I'd taken my iphone so I could provide a picture, but essentially, there was no viewing gallery, and it was slightly bigger than my bedroom, not the expansive empty spaces with a bed in the middle they show on medical dramas. A very sweet resident gave me a numbing agent so she could get the massive needle in my arm that anesthesia would need, and she missed (which was fine, because I was numb), but she seemed very upset to hurt me before surgery, so the doctor took over and numbed my other arm and got it in. My last waking memory is a doctor or resident I'd never seen before (and haven't seen since) walking in and saying to Dr. Nayar "What an unusual case, huh? We don't see.." and being shushed by Dr. Nayar because I was still awake. I said it was okay, I already knew it was an odd tumor, and while Dr. Nayar smiled at me from behind his mask and glared at the guy who put his foot in his mouth, I think I went out. If there was anything else, I don't remember it :)
As I understand it, after I was asleep, a team of people flipped me into a position rather like praying where I was on my knees with my chest resting on a table and my head screwed into a halo to hold me in place in case I seized or drooped or anything. They inserted a drain in the front of my head and made an incision up the back of my neck and about halfway up my skull. I'm not sure why they didn't need to make the upside-down L that we'd originally discussed, but whatever, it ended up working. Then, they got to work removing the tumor, which filled my 4th ventricle compressing my cerebellum, wrapping around the brain stem, a major artery, and snaking through my top two vertebrae, C1 and C2.
Anyhow.....a little over 16 hours later....
I woke up.
My poor family waited all day. They played Cranium and Headbandz (this is why I love my family) and had food delivered from Austin's wonderful work colleagues. They waited and watched other families leave happy and new families come in who had shorter surgeries. They waited while the waiting room cleared out. They waited while the nursing staff for the waiting room left for the day. They waited while the recovery room staff left for the day. Bless their hearts, they waited 16 hours for my surgery to end.
I had 16 hours of brain surgery. (And I lived! If you're having brain surgery, chances are yours will be way shorter, so fear not!)
I don't remember much from waking up. They had to take me directly to the Neuro ICU because, as I mentioned, recovery had already shut down for the day. Apparently I overheard someone say that the surgery had taken 16 hours, because when Austin and my mom came in I demanded to know "What took so long?", which made them both elated. I spoke. Slowly and with great difficulty from the medication and all the trauma to my noggin, but I spoke.
The first night was HORRIBLE. I had the only bad nurse I've ever had at Georgetown and she hurt my head getting me out of the CT scan they forced me into a few hours(?) after I had surgery. In the ICU, my family could only come in 15 minutes out of every hour. I remember very little from the first several days, but according to my family, I'm fun on steroids and in incredible pain.
Not really, though.
Apparently I cursed like a sailor at everyone about everything, I was super-sensitive to noise, and I just wanted more valium.
Let's take a moment to talk about Valium. I am not typically a pain medication person (as discussed in part one) but after major skull-cracking surgery, Valium is the most amazing thing in the world, forever and ever amen. I remember feeling joy like Christmas Morning when a nurse walked in with a syringe. Syringes meant it was Valium time, and whether I was sleeping or just drugged out of my mind, the pain wasn't overwhelming. I remember getting a sponge bath and freezing near to death, and I remember having Occupational Therapy come in to see if I could drink (I couldn't, having the breathing tube in for so long shut off one of my vocal chords). I remember thickened cranberry juice tasting like the best thing on earth because I was so very very thirsty after a few days, even though I was getting IV fluids. I remember blowing IVs....I think I had 18 different IVs started, by my last day at the hospital, they had to call in the vascular team who tried to start one in my foot (SAY NO TO FOOT IVs!!) and then used an ultrasound machine to place one about 2 inches from my armpit. I remember them taking out the drain, too. It was very weird because when they pulled it, there was this strange sensation as cerebrospinal fluid leaked down my face, but it was the same temperature as my body so it didn't really feel wet. Then I got stitches without drugs, and that wasn't so cool, but it was only two. (Edit: I feel like I should mention that most of the pain in recovery was from them having to move and cut muscles around to get the tumor off of C1 and C2. I remember (yay! memories!) My Uncle The Surgeon (Muts) talking to Dr. Nayar before heading home to NC, and as a spinal surgeon knowing what the muscle damage would mean for recovery. In a voice I would assume is only used on the clinically incompetent and those in delerium from post-surgical medication MUTS told me "They're going to offer you some pain medication. You're going to want to take it." That man didn't get a medical degree for nothing, people! He was RIGHT! Take the meds!)
Other things happened, but I don't remember them. Apparently I had roommates, apparently I saw my SIL, apparently we had dinner in the waiting room on the 13th for Savannah's actual birthday, apparently my friend Gaby came to say goodbye (she came up from NC to help with the kiddos), apparently I can drop the F-bomb with the best of them, but I don't remember. (In addition to the valium, I was on steroids to help combat post-operative swelling and I apparently get some roid rage. Your family will forgive you because you didn't kick the bucket, and it gets better quickly as they wean you off).
As far as side-effects, I had MASSIVE blisters on my knees and breasts from having the entire weight of my body on them for 16 hours. Massive. I still don't have feeling in those locations, either, except for little bits of pain as the nerves come back. The left side of my body feels like it has pins and needles. I couldn't swallow except mechanical soft (and they kept trying to feed me pureed turkey and mashed potatoes, so now I have a gag reflex to jarred turkey gravy!) the first few days, but I'm better now, although I still can't sing right. I was slow (both in speed and in speech/thought), but I'm getting better from that, too. I developed a few more fun things after radiation, but this is what I remember from the hospital. My neuro exams were all great, and even though my left side "felt" funny, it was still strong and functional. I consider that pretty miraculous. Your brain stem controls some pretty important stuff.
I was in the hospital for 8 days. Most of those were in the ICU, although I did get to go to the stepdown for 2 or 3, and my favorite nurse Grace was there. I love Grace. Getting ready to be discharged, one of the Neurosurgery residents confided to me that after such a massive surgery, they expected me to be in the hospital for weeks and discharged to a rehab facility, but I had never really considered that option, and apparently that wasn't God's plan, either.
When I went home, here's what my head looked like after some cleaning (I did manage to get an ICU nurse to let me take a real shower by promising to take my mom in the bathroom with me, hooray!):
This is where the drain was inserted (staples) and where the drain came out (stitches near the bottom of the picture). You can't see the screw holes very well, but they're still there. I don't think my hair will grow back there.
So. That was an adventure! I was diagnosed with an Ependymoma (they can't tell you for sure what a tumor is until they put it under a microscope), and the great news was the surgery was declared a total gross resection (they got it all). Adult Ependymomas are rare to begin with, but they're especially rare in the brain. Most adult Ependymomas occur in the spine, the presentation that I have is more typical in children. You can read more about Ependymomas at the CERN Foundation website. There's not a lot known about these tumors, but they're learning more every day. Being a rarer type of tumor, the lack of research and protocols makes it even more difficult to take the next steps in treatment, but we'll cover that next time.