So today I have to email a new doctor and I don’t want to. I feel like I’ve paid my dues in the medical realm.
On May 21, 2013, I underwent elective brain surgery. Why would anyone elect to have their brain cut open? Absolutely debilitating headaches that take you out for hours to days at a time over the course of four years, and continually get progressively worse, push you to the point of saying, “Yeah, sure! Slice my head open. Sounds good!”
(warning:one mildly graphic scar photo a little ways below - but if you’ve watched ‘Scandal,’ this is child’s play)
My elective surgery saved my life. After opening up my brain, my baller neurosurgeon/friend/mum’s colleague went to find my parents. We’ll call him BallerDoctor. It’s a little strange to think of my brain just chilling in the open air. Also do you want to know my biggest regret in life thus far? Forgetting to ask BallerDoctor to snap a pic of my brain while he was mucking around in there. I mean, I had the chance and the chance will never present itself again (at least it better not.) I blew it. Merp.
“Becky’s brain was gray and very little oxygen was reaching it, therefore it was not pulsating well. She'd been living on borrowed time. In addition to the procedure agreed upon, I had to cut through the lining of her brain, remove some dura from the top of her skull, and make a little patch in the back to give the brain more space.” — Why, yes - I AM so smart that my brain is extra big and needs more room to compute its brilliant ideas….
Apparently, the scans I’d been having to monitor my very common (but also rarely and severely symptomatic, hence the choice to have surgery) brain malformation had not told the whole story.
Let me tell you something - waking up from brain surgery is a b***h. When I woke up from the successful surgery, I almost immediately started vomiting. Actually, I was HURLING. I’d been ‘under’ for longer than expected and my body was not loving the repercussions of that extra anesthesia, so it decided to rid me of it in the most vile way it knew how - for three days. At one point I begged my doctors to give me enough pain meds to kill me because l really did not think I could take the pain. My time in neuro-ICU is pretty foggy due to a plethora of Michael Jackson’s pain meds being IV’ed into my body (they are MIRACULOUS,) but it’s truly remarkable how your body doesn’t forget that level of excruciating pain. Wanna know the weirdest sensation? Feeling every.single.pulsation of your brain. In case you didn’t know, it pulsates the way your heart beats. And if your brain had been slammed up against your skull for years, you wouldn’t know that. But once that pressure is relieved, you find it out real quick and it is weirrrrrd.
Getting to the point of choosing to have brain surgery was a four year process that began in 2009.
Feb 8, 2009 |
fly back one day early from college auditions at my mum’s annoying insistence. She has these things that she calls ‘holy spirit holds’ where she knows she’s supposed to do something, but she has no real, concrete reason why. You might think she sounds wacko, but I kid you not, every time she’s honored that “feeling,” it has paid off. There was no reason for us to fly back a day early and I wanted to miss an extra day of school, but she had a “feeling.” As a high schooler not particularly interested in the school part of high school, I was not amused.
Feb 9, 2009 | 3:45pm -
pull my car over on the side of the highway due to severe stomach cramps. They pass, so I ignore them.
Feb 9, 2009 | 7:00pm -
in rehearsal and turn to a friend and tell him I think I’m gonna puke
Feb 9, 2009 | 7:15pm -
make it to the bathroom just in time to start uncontrollably throwing up blood. Not vomit with some blood in it or the type of blood that comes out after you’ve been vomming for a while and have scratched your throat. No. I was throwing up only blood. And not old blood. I was throwing up pints and pints of fresh, red, blood and I couldn’t stop.
Feb 9, 2009 | 7:45pm -
Mum picks me up from rehearsal and takes me home, while I continue to vomit blood into a trashcan in the car.
Feb 9, 2009 | 8:30pm
Mum calls 911
Feb 9, 2009 | 8: 45pm
Ambulance arrives. I code in the ambulance on the way to the ER, so they divert and take me to the closest hospital, not the one we requested.
Feb 9, 2009 | 9:00pm
Arrive at the hospital. My whole body is numb and tingling
Feb 10-18, 2009 |
ICU. Since they can’t find the source of the hematemesis (or as I like to call it, vomming blood,) and since the vomming didn’t stop for three days, they decide to look at every part of my body. I have the first of many MRIs, CT scans, spinal taps, blood patches, bleeding time tests, blood draws, and neurological exams. Over the course of this week, they discover a brain malformation, a blood disease, a connective tissue disorder, and cysts down my spinal cord. This vomming blood episode flung my previously asymptomatic existence into symptomatic overdrive. While that was extremely painful, it was not life threatening. And unless it’s going to kill you, you can pretty much convince yourself, and your body, to do anything.
[If my mum had not heeded her “holy spirit hold,” this would have all gone down in Chicago - a city where we knew no one and had no medical connections. We would have been forced to spend a week in their ICU and then go through the grueling and complicated process of having records transferred to Houston, choosing new doctors ourselves, and trying to explain a medically inexplicable situation to people who were not there to witness it.]
Over the course of the next couple of months, we ironed out the members of my medical team and began to look for ways to calm the symptoms.
[If I hadn’t coded in the ambulance, requiring a diversion to the hospital that was closest, as opposed to the one of our choosing, I would never have the team I have now. This team of internationally recognized doctors not only saved my life, but they have become a part of my family. They’ve answered calls and texts in the middle of the night and met my family and me in emergency rooms in the early hours of the morning. They’ve even come to my shows and performances.]
I get put on some headache medicine, one of which I quickly had to stop taking due to the fact that it made me forget everything. Literally. My mum would tell me to do something, I’d agree, and later when she’d get annoyed that I hadn’t done whatever it was we’d discussed, I’d get frustrated and tell her the conversation never happened. This was initially chalked up to me being an annoying teenager (which I indeed was,) but a couple months in, my mum realized that I wasn’t that annoying (no, really.) I forgot how to get places that I regularly drove to or that I had conversations. I’d call my dad and he’d say, “Treasure, you called to tell me that a little while ago.” It was scary.
I became a pro at lasting through never ending MRIs (the longest I ever did was 8 hours with very short breaks) despite being claustrophobic. I have a phenomenal system and if you need tips - I gotchu. I became oddly used to the sensation of peeing myself provided by the contrast medicine used in CT scans (don’t worry, I didn’t actually pee myself.) I once watched a blood draw butterfly needle pop in my arm and send blood flying everywhere - I barely even blinked. I’ve passed out from having too much blood drawn at once, and I learned how to keep still while a doctor sticks a long ass needle into the space around my spinal chord, and then later injects blood into that space and tells me to “take as much pain as I think I can."
The day the blood vomming began was one of my first days of rehearsal for a production of “Beauty and Beast.” I’d been out on tour for my junior year of high school with the Andrew Lloyd Webber musical, “Whistle Down the Wind,” and came back to Houston really nervous about adjusting to life off the road. “Beauty and the Beast” was one thing that had me really excited. And then I got sick.
A combination of miracles, grace, and patience on the part of my school, the company producing “Beauty and Beast,” and the cast I shared the stage with, allowed me to continue on in the role of Belle. In a way, it saved my spirit. It planted a seed that I would need to survive the next four years. Amidst a never-ending slew of doctors appointments and bad news, it was a reminder of the thing that brought me joy my whole life, even while muddying through the darkest circumstances. For just a few hours every night, I escaped my reality and stepped into the shoes of a young woman who also needed hope, and refused to believe that new beginnings weren’t possible. You could hear little girls gasp when I appeared at the top of the stairs in my yellow ball gown. They reminded me that magic was real - and I needed all the magic I could get. Over four days, we got to tell 20,000 people that magic was real in a massive outdoor theatre that is the stuff of dreams. My dad loves to describe leaving the theatre early one night to catch the metro, and hearing my voice echoing across Hermann Park. He says he stopped with tears in his eyes and just listened to me sing “A Change in Me”, whose lyrics couldn’t be more fitting to the two months we’d just pushed through.
Two days after my high school graduation, I was met with the following words from a cardiologist (we’ll call him DrNoName):
“well, I hate to say this - you need to find a new career. You have a grossly enlarged aortic root. It is more than likely another symptom of the greater issue we can’t yet diagnose. If you continue to pursue this career path, you will likely die. The over-exertion on your body will cause your aorta to burst. I know you’re going on a mission trip in a few days to work with children, but you cannot pick up a child. You can’t even move a box. Not until we figure out a way to reduce this dilation.”
I could see his lips moving and I could hear what he was saying - but I couldn’t compute. Two days after my high school graduation, and DrNoName was basically telling me that my life as I knew it was over. This was supposed to be a “just in case” check-up. When my doctors suggested I see a cardiologist, it was as a total precaution. They had no reason to believe anything was wrong with my heart, but since almost every other major organ had been looked at over the last three months, it “couldn’t hurt” to check my heart, too. Up to now it had been scary and weird, but nobody ever even remotely mentioned death as a possibility. The idea wasn’t even on our radar.
You will likely die? I felt all the breath leave my body and I just barely squeaked out a quiet “ok.”
Insert Judy Moyes into the conversation. Things to know about my mum:
- She is mad smart - one of a handful women in the world to be accepted to the Cambridge University med school in 1974. Seven degrees and a phenomenal pediatric oncologist.
- She is not to be messed with
- We would not have made it through months of testing, diagnoses, worsening symptoms, college decisions, and doctors appointments without her
- She cannot stand morons
- She is fiercely protective
“Excuse me, DrNoName, would you mind stepping outside for a minute to walk me through these test results a little more extensively?”
Yo, that’s how you know that Jude is PISSED.
She ripped DrNoName, who you can well guess is no longer a part of my medical team, a new one for the way in which he relayed life altering medical information without any type of hope or concern for the way a teenager might react to that information.
[But you know what? If he hadn’t been such a dumbdumb, we never would have been placed with my now cardiologist, who we’ll call DrNotToBeMessedWith. DrNotToBeMessedWith runs not only the cardiology department, but also the entire internal medicine department of the hospital and the Heart and Vascular Institute where my care is based. DrNotToBeMessedWith never misses my 6 month stress echo - in fact, he stands right next to me the entire time. He also managed my cardiac care during my brain surgery … from CHINA, because that’s how much he cares.]
But that day, the only words I kept hearing over and over again were, “You will likely die.” I was MAD. Why did this have to happen? Why did I get 18 normal years with these stupid problems lying dormant and then everything came crashing down all at once? I felt like a shell of myself. Two girls who were my “friends” started questioning if the problems were real since they couldn’t see them. Cue us not being friends anymore. I had a few of my college options stripped from me due to the necessity that I needed to be close to high ranking emergency centers. Within my first two weeks at college, I had to wear a heart monitor for a week to gauge how my heart was reacting to the rapid increase in physical activity - under a leotard. It wasn’t exactly inconspicuous. I was mortified and I was guarded.
So how did I respond to this news? I decided to push my body to its limit. I drank until I threw up regularly. I stayed out way too late and never got enough sleep. I pushed myself to a breaking point until Valentines Day 2010, when I had to fly back to Texas for an emergency myelogram and blood patch.
When you have a myelogram, they strap you to a table that resembles one of those spine inversion chairs (except you’re on your stomach,) insert a lumbar needle into your spine, push dye through that needle, flip you upside down, and watch on a screen to see which of the multiple spinal cord cysts I had, the dye would leak through. Once that’s been established, they determine how many of the many cc’s of blood that have been previously removed from your arm will be necessary to insert into the space around your spinal cord, then squirt blood into that space, until you can’t stand the pain anymore. That part is called a blood patch. The blood acts as a glue, sealing the holes in your cysts, and allows the spinal fluid level in your brain to rise back up to a healthy level. THE HUMAN BODY IS AMAZING.
(she looks oddly happy and comfortable - I can assure you, I was not smiling.)
Once they were finished, my doctors gravely looked at my mum and me and informed us that my levels of spinal fluid were alarmingly low. They lovingly, but firmly, reminded me that ensuring that I did as little as possible to exert force on those cysts, especially vomiting, was of utmost importance. I feigned innocence, though everyone in the room knew better, and went to recovery. After that day, I swore that come hell or high-water, I would never ever subject myself to that stupid procedure ever again. HA.
It’s funny when you think you get to control your own life. Fast forward three and half years, six weeks post brain surgery, and I’m still not able to walk. I can physically do it. Like I could put one foot in front of the other, but I couldn’t stand upright without pain so severe that I would pass out. Nobody knew what was going on and we started to think that I was stuck this way forever. Before my surgery, my doctors warned me that the cysts down my spinal chord made things much more complicated. There was a chance, small - like 5%, but still a chance, that I would be irreversibly worse off after surgery than I was pre-surgery. I decided the potential reward outweighed the risk. I began to strongly regret that decision around week three post-surgery. By week six, I was going out of my mind.
My whole life, I planned to move to New York and be on Broadway - and if I’m being honest, I never doubted I could do it. Call it pride or call it confidence - it was what it was. I worked hard, I was talented, and I wanted it. During the fall of my senior year of college, my mum called me to say that the team she worked with at MD Anderson had just hired a new neurosurgeon (BallerDoctor.) After hearing about my situation he told my mum that he may be able to help me and would like to meet with me.
Vehement no. In no way was I interested in meeting with a man who cut into people’s brains for a living. But as the year progressed, so did the headaches - and by spring break, I was feeling a little desperate. At the end of a very long appointment we made a deal. If the New York showcase that I was performing in with my class in a few weeks went as planned, then I would move directly to New York and forego surgery. If it didn’t, I’d come home and have the surgery. I'd had a pretty great year at school and enough of the visiting industry guests had expressed interest in me, so I thought my plan was foolproof. I’d move right to New York, and I’d get out of this surgery.
Ha. Expectations were not met and I was devastated. I’d just come through what I considered to be the toughest months of my life (my first real heartbreak) and I was shattered. The last piece of hope dissipated and I realized that I truly had nothing to lose - no career to speak of, no one to spend my life with, and I couldn’t imagine it was possible for my headaches to get any worse. So I kept my word. And it saved my life.
[If my life had gone according to plan, I never would have had that surgery and I may not be here now. Borrowed time is a strange way to look at life on earth.]
So here we are, six weeks post brain surgery, and I’m no better. My doctors are stumped and they recheck my charts. Maybe in those first three days of vomiting, I had burst the majority of the cysts in my spinal chord. The idea of doing another blood patch as a last ditch effort to improve things is pitched. Remember that? The inverted table hell? My short and concise answer was as follows, “F**k no.”
That’s how much “taking as much pain as possible" hurts. It was being marketed as a way to relieve post-brain surgery headaches and the inability to walk, and I was still saying no. But a week later, I conceded. If it was my only chance to feel normal again, I’d take it, because I sure as hell couldn’t take this. Two days later, I was up and walking around.
[If I hadn’t made the decision to drink myself into oblivion out of anger many a night during that first year of college, we wouldn’t have had the key to revealing the actual success of my surgery which gave me a completely new life.]
I haven’t had what I dub “brain headaches” since that day. I never thought I would know what it felt like to live life not in pain. Knowing what life New York is like, I now know that I would never have been able to handle it in my pre-surgery existence.
[If I never got sick on February 9, 2009, we likely would have found out too late that I had a brain malformation and a heart condition. A brain malformation that was fixed in surgery and a heart condition that has no bearing on my career path or my day to day life, despite what DrNoName said, because it’s controlled by medicine, diet, and exercise.]
My doctors never could figure out what caused the initial vomming up blood that started all of this. Every single test (and there were MANY) came back inconclusive. But I know what (or Who) it was.
The day before my surgery, one of my mum’s friends from Bible Study called me and asked if I could come over. She felt like she’d "heard from the Lord" and wanted to share with me. I finished up my manicure and eyebrow wax (priorities, people. If I was going to die in surgery, I was going to die looking good) and headed over. She told me that, while she was praying for me, she felt led to turn to Psalm 91:4 in her bible:
“He will cover you with His feathers and under His wings you will find refuge"
She said she had a vision of me in that operating room - that there would be feathery wings like the ones the Victoria’s Secret angels wear (I kid you not) on either side of me, keeping me suspended in the air - and that they would keep me safe.
Listen, even I was like - “ok wackadoo" - and went on my merry way.
Halfway through my surgery, BallerDoctor told my parents that one of the brackets keeping my head in position had malfunctioned. He had no idea how or why - there was a one in a million chance of something like that happening. It was as if someone took a hammer to the bracket because all of a sudden, it snapped, the screw grazed my scalp in a line as my head began to fly downwards, and then it was almost as if my head was suspended in the air, giving the cardiac anesthesiologist time to hold it safely in place before any damage could be done. I mean, this is brain surgery. It’s not ideal for your head to be moving around while BallerDoctor is in there with a knife. The surgery was abruptly halted while they retrieved another bracket and clamped my head again so that it wouldn’t move. Crisis over. I didn’t totally believe that story until I read it in the medical report a few months later. How was that possible? Because, Jesus.
I don’t know why God has chosen to save my life over and over again. People tell me it's because I have a purpose, a great calling on my life. But there are people all over the world dying every single day. Are we saying that they had no purpose? No calling on their lives?
Being faced with medical uncertainty has put a lot of things in perspective for me. Death is a reality - something I’m both afraid of and yet have been forced to come to terms with. Science would say that one of my medical issues will be the thing that takes my life one day down the road. Maybe. Maybe not. I know that day will not come until I have accomplished what I was put on this earth to do. And when that day does come, I’ll be one of the many all over the world dying that day, and it won’t mean I had no purpose or calling - it will mean I fulfilled it.
Almost seven months after my surgery, I got a tattoo of a feather on the back of my neck as a reminder of this saga. And you wouldn’t believe how many times since my assault people have asked me why it was there. A tattoo I never see unless I look in the mirror while holding another mirror - almost as if God just wanted me to be reminded that while I couldn’t see my worth or value, it hadn’t gone anywhere. He covered me with His feathers and He gave me refuge once before - why wouldn’t He do it again?