8

Fly Into The Mystery

Suggested listening: “Fly Into The Mystery,” by Jonathan Richman and the Original Modern Lovers

Tuesday, May 15th, 2012

I have only traveled through, the fourth largest city in the country, a handful of times in my life. While driving a twenty-four foot U-haul 885 miserable miles of Texas interstate, both before and after my short-lived move to Los Angeles, as well as a couple of weekend trips to Austin. Besides layovers in the airport or the minimal amount of time you spend in a shit-n-get or fast food joint, I have never really spent time worth noting in the self-proclaimed energy capital of the world that is home to NASA and the Bush family, and that has been perfectly fine by me.

I have never been much of a fan of America’s largest state. Perhaps it was that misery filled drive home with my recently separated ex-boyfriend or the hope-filled turned hopeless romance I encountered during a work experience in Dallas that ended in much more than just lost love. Perhaps it is simply from having been brought up in its neighboring rival state and consequently surrounded by Texas state hate. My distaste surely due to a multitude of things, but mostly due to the feeling, or blatant lack thereof that I become aware of any time I cross the Texas border.

It has not seemed to matter what city I have been in within the largest contiguous state, I always come to feel as though it is lacking, and lacking something big. As far as I have experienced, the last bit of soul that Texas possessed was that of Janis Joplin, Roy Orbison and Joe Tex; and they are all long gone. Suffice it to say, I am not looking forward to my next odyssey across the state line, but remain hopeful that there are some hidden gems that remain to be seen.

The six-hour drive on Interstate 10 is long and ponderous. As I sit staring out of the window of my father’s 2009 cherry red Dodge Challenger that was left to my mother when he passed away, I prepare myself for the long journey that lies ahead of me realizing that this trip will be the first of many. 

My mama and I pull up to our luxury hotel located in the heart of the Museum District in the early evening. Taking into consideration that not only did I just receive life-changing news, but that my next overnight stay in Houston will more than likely be in a hospital recovery room, I feel compelled to treat myself to at least one nice overnight stay; of course not without using hotel loyalty points I accumulated from work. Aching from sitting for so long, when checking in Judy warmly makes the decision to reserve the room for a second night and is very vocal in letting me as well as the front desk attendant and anyone in an earshot that she does not want to make that drive after a day spent at the hospital.

We change out of our driving clothes and walk arm in arm to the Texas steakhouse inside of the old Hollywood inspired, nouveau glamorous, Hotel ZaZa. Over the course of the past two weeks, my left leg has weakened in a very drastic way. The cognac suede sling-back wedge I am donning to dinner barely stays on my foot despite pulling taut the strap to a galling tightness. Nonetheless, my left ankle continues to uncontrollably twist and pull away from me like a fish just yanked out of water. Clenched to the arm of my mother, I drag the unruly sling-back attached to my limp ankle as we very slowly make our way across the tremendous restaurant to our table situated in the attached window encased veranda overlooking the Mecom fountain. We talk about how nice it would be to go to all of the museums, especially the Menil Collection, over a glass of wine and two decadent Texas steaks; wistfully hoping that some day in the near future my body will allow it.

Wednesday, May 16th, 2012

Early the next morning we pull up to 1515 Holcolmbe Boulevard to sit in a valet line thirty to forty cars deep. The hospital is generous enough to cover the twenty-dollar cost to valet park during your first visit to the center. As we sit for what feels like an eternity, I peer out of the windshield at the cars in front of us as we slowly move forward car length by car length. An elderly man severely trembles while stepping out of a silver sedan before quickly being ushered into a wheelchair by fumbling, young valet attendants. Exiting the car that follows him is a woman whose head is tightly wrapped in a neutral colored silk scarf looking as fragile as fine china as she slowly emerges from a white SUV. Walking closely behind her is a woman with a distressed uncomfortable scowl and completely bald head ... each and every car ahead of me holds a patient. Each and every car before and after me holds someone plagued by cancer. This was going to be much harder on my heart than I ever could have prepared myself for.

I will never forget my first step into the corridor of the hospital. The enormous automatic glass doors open and the musk of sterilized ill hits me like a slap to the face. I pause in the grand foyer of the Main Building with my eyes as wide as saucers. There is illness as far as the eye can see slowly passing me from every direction; internally I make the correlation that this has to be close to what hell looks like. I stare amazed trying to decipher which way to turn in the daunting alphabetical maze that imitates an amusement park with its signs and arrows to follow to the next ride.

We pass a couple of brightly lit aquariums before taking Elevator B up to the 7^th Floor to The Brain and Spine Center, where Pam the cheerful blonde at the front desk greets me. Pam is extraordinarily nice and quite an unexpected surprise. I go on to introduce myself smiling from ear to ear and after a silly and innocent exchange between the two of us, I can see that Pam is taken by me. I can only suppose that it is not typical of the patients that come through this particularly difficult division of the center to be wearing a smile and poking fun. Before I take a seat in the waiting area, she merrily whispers to me under her breath, “you, my dear, are a much-needed breath of fresh air around here.”  

I take a seat in the waiting area where Judy and I are the two youngest people in the room. Shortly thereafter I hear the sound of my name being called out behind me. A beautiful black woman with fingernail length grey hair and colorful, funky eyeglasses who is probably in her sixties but unquestionably using some kind of miracle cream, greets me by making a joke about the name of the company that I work for, which includes the word “naked.” She tilts her head downward where I can see her bedroom eyes over the top rim of her glasses as she playfully says, “I didn’t know what to expect when I came out here.” She leans in and whispers suggestively with a tinge of cautious seriousness, “You aren’t a stripper are you?”

We laugh together as she leads me to her office tucked into a bright window-lit corner just behind the large waiting room. I reassure her that my job is far from that exciting. She takes a few moments to catch her breath, takes a seat and formally introduces herself as Sharon Hawkins. Sharon is the insurance coordinator for the Brain and Spine Center and my starting point for registration with the hospital. I give her my insurance card and driver’s license at her request, as she sets up a small camera on her computer to take a photo to attach to my medical record. After plenty of back and forth banter she hands me a folder with some information about the hospital to read, including a thin and flimsy card much like a credit card with the hospitals logo, my name, and 0927376 (my medical record number) on it. We hug before she leads me back to the waiting area, and when we part she insists that I come visit her when I am in the center, I had “made her day.”

My mama and I sit for quite some time before my name is called again. This time, Rochelle, Dr. Prahbu’s nurse, leads me into a small room attached to the waiting area to take my vitals and weight. As she walks to the examination room, I am unabashed in asking her if she is Korean. She seems surprised by the question. I can only assume this is perhaps in part because I am able to discern her nationality just by looking at her. Overly enthusiastic by the thought that I may be able to eat my favorite cuisine in Houston, I inquire about whether or not there is a large Korean population in town, and tell her about how New Orleans is a food metropolis with no more than two Korean restaurants. I ask her about her favorite Korean BBQ restaurant in town and she is quick to answer, Seoul Garden, before warning me that we may be the only non-Korean people in the restaurant. She couldn’t have said anything more exciting to me. Perhaps these trips to Houston will have some perks after all.

She takes a seat at the computer in the room and proceeds in asking me a series of basic questions about my symptoms, many of which have to do with elimination issues. Evidently things could be much worse; I suppose amidst migraines and nausea, I could be suffering from bloody and blocked stool. We talk about my medications, headaches, memory loss, confusion, difficult walking, personality changes, fatigue, as well as the weakness and incoordination of my left hand and foot. Once our discussion is through and all of the boxes on her list are checked, she leaves the room to get the man of the hour.

Some thirty minutes pass of listening to my mother complain of the long wait, when a tall, slender Indian man with high cheekbones and small caring eyes set behind thin rimless frames enters the room with a clever opening line and endearing grin. I cannot help but immediately favor this charmer. Dr. Prabhu is professor of Neurosurgery at the University of Texas and now my neurosurgeon. Standing well over six feet tall, when I get off of the examination table to shake his hand, he looks me up and down asks if I am a basketball player.

I cannot help but burst into laughter. You would think with my height I would be great at basketball, but that has never been true. I have never been coordinated enough for it, but am realizing that there may have been reason for that and it has been taking up some pretty valuable space up there. 

I hear you may be the guy that can turn me into a star athlete.

He looks to his nurse practitioner, who apologetically slipped into the room a couple of minutes late, and says, “Uh oh, Betsy, looks like we have ourselves a live one here.”

He has a seat on the vinyl rolling swivel chair and crosses his arms. He bobs his head three or four times with an inquisitive look on his face, taking several seconds before asking me about my job and working with Mark Cuban. It is then that I recognize that this may have been the real reason he was asking me if I was a basketball player. I tell him about what I do for the company and working with the man with the Midas touch while he settles more into his seat.

The humor quickly dissipates when we begin to discuss my symptoms; how they began and leading up to all of my symptoms within the last twenty-four hours. He is very frank in telling me that the brain can only take so many “hits” before irrevocable damage is done, reaffirming not only the importance of having the tumors removed, but also the swiftness with which these chain of events must occur. He reminds me that my surgery is arranged to take place in the hospitals BrainSUITE® on Tuesday, May 22^nd, which is just six days away.

Just as both doctors had before him, he performs a similar series of standard tests. He listens to my breathing with a stethoscope, shines a handheld light in my eyes horizontally, and asks me to follow his finger as he moves it from left to right. He asks that I close my eyes and touch my right index finger to the tip of my nose and then has me do it with my left, gradually adding speed. He does a test of my reflexes. Touches my hands, legs and feet on each side asking whether or not I can feel it, and whether or not the feeling is the same on each side. He has me hold up my arms and close my eyes looking for a drift. He holds up both of his hands in my peripheral, one on either side of my head and asks that I tell him what number of fingers he is holding up while changing the numbers of fingers quickly as I shout them out. He has me walk one foot in front of the other in a straight line on a diagonal across the room, and then do it again, but on my tippy toes. Trying my hardest to do well at this most simple and essential test, I fail miserably. I am visibly impaired and conscious of it, which I am coming to find to be one of the worst symptoms of all.

He takes several more seconds before speaking after administering his tests. I can see him thinking and figure that he is probably trying to think of something cunning and clever to say; and captivated I am waiting for it.

He asks, “So do you want the good news or the bad news?” And although I am not sure that I can handle any more bad news, I ask for it first.

Dr. Prabhu looks over the MRI just as Dr. Coranes had just about four weeks prior. He shows and explains to the two of us where the tumors are located and how it correlates to my symptoms with regard to their positions. He explains:

• The solid tumor is mainly nearer the rear posterior body of the corpus callosum, above the thalamic area and extending into the right cerebellar hemisphere.  
• The cystic tumor is located on the deep white matter partially involving the corpus callosum and extending into the centrum semiovale, the semi-oval mass of white matter in each of the cerebral hemispheres under the cerebral cortex.
  

The Bad News 

Both my solid and cystic tumor are deeply rooted within the center of brain on the right side, which explains the left sided needles and pins that I first experienced in January, my recent current left leg sluggishness and quite possibly why I have been completely uncoordinated and physically imbalanced for as long as I can remember. An 11mm midline shift has occurred with the increased intracranial pressure created by the cystic mass. The migraines and neck pains are due to significant mass effect caused by the pushing and displacing of the surrounding tissue of the corpus callosum.

“Your tumors are affecting your motor skills because they are in an area of your brain that is essential to motor coordination; this making it extremely dangerous to operate," Dr. Prahbu affirms.

Without specific knowledge pertaining to the anatomy of the brain directly on hand and having not heard it mentioned at any point in the conversation, before he continues I ask which lobe my tumor is located? He visibly hesitates and looks to Betsy before answering “the temporal lobe.”

The Good News 

The good news is that the solid tumor is so large that it is assumed to have been growing for a very long time, confirming what Dr. Coranes had suspected. With that being said, he states that in all of the tumors he has seen over his career, he is 99% sure that my tumor is benign and would be astonished if it was determined otherwise. A calm washes over my mama and I. Two highly accomplished neurosurgeons both believe with certainty that my tumor is not cancerous.

He turns around on the rotating chair he is seated in and says, “with that behind us, let’s talk about surgery. The goal of surgery is to take the most tumor possible without harming any nearby areas. The Brainsuite® acts as a GPS system in the brain simultaneously using an updated MRI to navigate during surgery. This system allows for a more precise treatment for complicated tumors in sensitive areas of the brain, such as mine. He states that the craniotomy can typically take four to six hours, but all depends upon what he finds while he is in there. He pauses again before asking, “Any questions?”

My mama takes the lead in asking the first question, “Can the tumor spread to other parts of her body?” The doctor explains that a primary brain tumor never leaves the brain (unless removed of course). In cases such as breast, skin or lung cancer, the tumor can metastasize upwards from another part of the body, but the brain will remain its final destination. I find it interesting to learn that once a tumor reaches the brain, it cannot spread downwards.

I have been waiting and preparing for this moment, but begin to blush as my nerves get the better of me when it becomes my turn to speak; it harkens back to elementary school when presenting my “experts journals” in the fourth grade; but this is far more significant and much more personal than my research as a nine-year-old on the planets of the solar system or seven wonders of the world.

There really isn’t much more that can be said. I feel as though most of everything has been covered. I am still coming to terms with all of this, which is to be expected; and be that as it may, I am going through quite an existential period. I am well aware that this will come across as superficial, but I am tremendously concerned about losing my hair. 

How much of my hair are you going to shave off during surgery considering it’s size, and where exactly are you going to saw into my head?

He stands up and takes my hand from my lap and places my right hand on the rear top portion of the right side of my head, the outside of my hand touches my outer ear. When I ask again how big the incision will be, he is quick to say “the size of your hand.” I stare down at my hand that is at least six inches long and four inches wide before bursting into tears. My mama pulls her seat next to me on the examination table and slowly grazes my back with her hand. 

Betsy, Dr. Prahbu’s short but fiery read headed nurse, serious with biting sarcasm shamelessly shouts at me in her loud voice, “You have a massive tumor in your brain and you are worried about your hair! It’s only hair, and hair grows back!” I know what she is saying and how she is saying it is hilarious and true, but in this moment I am not capable of laughter. I further express all that I have researched including my research about hair loss expressing how I am not only afraid of losing my hair in surgery, but losing all of it during radiation.

They are both quick to react, “You are not going to lose all of your hair, just the hair on the part of your head where the surgery is performed;” again reiterating that it will come back. I talk about scaring and radiation’s track record for permanent hair loss, when she says exactly what I have read about the hair not growing back the same, texture, thickness, or color. I try my best to accept what they are saying and force myself to comply before making my final request; a request that I fear may have consequences but am willing to take a risk,

“Can I have a piece of my tumor?”

Betsy and the doctor look to each other as shocked as I had upon learning I had a tumor while sitting in Dr. Brandt’s office. His eyebrows could not possibly raise any further upwards when he responds,

“You are very weird, Erin Buckley. That is by far the strangest question any patient has ever asked me.”

Truly, I am surprised by both his and her reaction. Not so much the part where he calls me weird, people have been pointing that out to me since I was young, but more that they would be so disturbed by a patient who would want to see their own tumor for themselves. I find it odd that I am the only patient curious enough to ever ask? I explain to them that I want to see it, touch it, and am very candid in telling them my intentions to put it in a small glass vessel to display at my house, arguing that it is a medical oddity, and it is mine.  They both stand absolutely horrified by my request, and he is blunt in saying “absolutely not.” It goes against medical standards and ethics. It is standard practice to keep the rest of the tumor should it be needed for my benefit in the future.   

Upset that I cannot have or even see something that I have grown for years and feel rightfully belongs to me, I digress and alternatively ask if he will keep the hair that they will shave away during my surgery for me. His expression is a perturbed one and he lets out a loud sigh as he stares down at the floor while adjusting his glasses. I make a half-hearted joke that I want to use it to make miniature glass vile necklaces to give to all of my ex-boyfriends, but am serious in expressing that at the very least I would like to see for myself how much of it I loose through this process. In my vanity, I explain how much my hair is a huge part of my self-identification and the emotions that come along with the idea of losing it, and as strange and silly as it may be to him, it is something that is important to me. I implore that he grant me this favor, and though he is visibly put off by my odd requests agrees to make an exception, not without letting me know that I am the only person to ever ask for this as well.

The conversation has wound down and I sense that it is time for him to moving on to the next. Seated eye to eye in front of one another, he tells me not to worry, that I am in good hands before saying with a smile, “who knows, this surgery may even make you even smarter than you already are.” He gives me a solid, firm handshake and tells me that he will see my next week before they both exit the room.

Judy is exhausted; physically for sure, and I can only speculate emotionally as well, not to mention her patience has been tested more than once today. She is ready to go to the hotel after we leave Dr. Prahbu’s office and subsequently pretty pissed when I remind her that I have two other appointments on my schedule, both of which have passed during my appointment with Dr. Prahbu.

We find our way to the X-ray lab so that I can have a chest X-ray performed to confirm that I do not have pneumonia. Thankfully there are no issues and subsequently the test takes no time at all. We cross the hospital again and show up to the office I am scheduled for my preliminary meeting with the anesthesiologist that will be doping me up during the operation, and find that she is no longer in clinic. This is understandable to me, I am more than an hour late; however, Judy becomes enraged. I am trying to calm her down, problem solve, and deal with my heightened emotions as best as I can. I put a call in to the Brain and Spine Center and make Betsy aware that we are leaving and my appointment with the anesthesiologist will have to be rescheduled during the pre-surgery days when I will be in Houston next week.

And as it so typically goes, the universe laughs at my mother with little patience. It would seem that every patient in the hospital appointments ended at the same time as mine by the especially long line to turn in our valet ticket to retrieve her car.  Again, I sit in a waiting area for a little under a half an hour with my mother amidst dozens of fidgeting patients with little patience acting like disgruntled motorists at the DMV, all clamoring and listening for their four digit number to be called.