7

People Come and Go and Forget to Close the Door

Suggested listening: “Some of Them are Old,” by Brian Eno

The proverbial ball is rolling and there is no slowing it down; I have far too many unanswered questions and uncertainty on my part to try and stop it. The position I now find myself in is beyond my control and I am forced to go through the motions, something that this daughter of Mike Buckley has never been comfortable with.

It has been one week since I learned that I have a brain tumor. My second week of knowing begins in learning that my tumor is unusually large and that there is a cystic mass, even larger than the tumor itself, not only crowding my brain but creating a considerable amount of pressure to it’s midline. Not to mention that both tumors needed to be surgically removed yesterday. I just cannot seem to process the information fast enough. This ball is traveling at the speed of a meteor.

Just as I thought that things in my life could not possibly get any worse, my second week with a brain tumor leaves me feeling like a target at the firing range; inanimate and as fragile as the paper it was printed on. After meeting with Dr. Coranes, my symptoms worsen significantly. The cloudy, ominous image lingers like a hurricane brewing in the back of my mind. It isn't until my eyes are able to see the physical manifestation growing inside of me for my symptoms to begin to reveal themselves regularly. My mind and body together begin more actively and consistently showing the signs that finally allow my brain to recognize this harrowing twist of fate.

Having been excused from work for six weeks, I further immerse myself in research into this expansive world that I am so ignorant to. I read anything and everything that I can find on brain tumors and craniotomies. I want to be well informed. I want to have at the very least, minimal navigation of the abyssal sea that I am diving into. I gain some basic knowledge, but am ultimately left begging even more questions - all of which I will need to wait to have answered by experts.

My search begins on the American Brain Tumor Association’s website. ABTA was the first and is now the only national organization committed to funding brain tumor research and providing information and education on all brain tumor types and all age groups. Their mission is to advance the understanding and treatment of brain tumors with the goals of improving, extending, and ultimately, saving the lives of those impacted by a brain tumor diagnosis.

Out of the eleven most common symptoms of brain tumors that the ABTA’s website lists, at some point over the past five months I have experienced eight:

People with Brain Tumors often suffer from:

-       headaches

-       seizures

-       sensory loss (touch)

-       motor loss (movement control)

-       behavioral changes (mood and personality)

-       vision loss (visual)

-       hearing loss (auditory)

-       cognitive changes (thinking)

-       endocrine dysfunction (hormone/gland changes)

-       fatigue

-       depression

Fortunately, I have denied having seizures, or experiencing any vision or hearing loss. Within a few days of seeing my MRI, however, I am experiencing all eight symptoms previously faced sporadically, on a consistent basis along with symptoms that the ABTA does not have listed, but are noted on alternate sites. As it turns out, the pain in my neck that I once thought could be alleviated by chiropractic care, is in fact a noted symptom; as is the painful aching I experience when bending over as well as the persistent sensitivity to light, both of which are noted symptoms associated with migraines.

Thursday, May 3rd, 2012

I am beyond grateful for the leave of absence I have been granted for endless reasons, for I know that if I were to be in the office I would in no way be focused on my work. I would be reading and researching, all the while battling severe migraines, fatigue, nausea and ongoing mental confusion in the confines of a corporate office. Around ten in the morning the Thursday following my appointment with Dr. Coranes, I make the drive downtown to hand in my physical medical leave of absence referral and personally brief everyone I work with on the newly found discovery. I use these couple of hours to take appropriate measures as the office manager to tie up any loose ends and prepare the office for my absence. A few of my colleagues treat me to lunch at one of my favorite lunch spots, the Phở stall at the food court in Plac St. Charles, about five city blocks away. As we are walking back to the office, my open-back sandal falls off of my left foot three times. Although this startles my colleagues, keeping with what has become my norm I shrug it off and make my way back to the office before heading home.

Friday, May 4th, 2012

One of my younger twin sisters, Ellen, is the Director of Events for the Audubon Zoo in New Orleans. Since the early seventies the yearly Zoo-To-Do fundraiser has raised over $25 million dollars in order to create and restore exhibits within the top ten-rated zoo. The 2012 Whitney Zoo-to-Do is Ellen’s first year as acting Director for this black tie gala that includes live music and food booths from 70 of New Orleans’ best restaurants, as well as 30 cocktail bars. It is an adult only affair under the stars and hundred year old live oaks of New Orleans’ zoo and home of thousands of animals. A few days before the event, Ellen phones me to extend some invitations. In a very dramatic gesture I tell the boy I am seeing and his friend who is also our housemate to figure something out, “You two have both just been cordially invited to a black tie affair.”

Come the day of the event I feel awful. I have been suffering from nausea, neck pain, headaches and the inability to focus since I opened my eyes. Ellen has been gracious in offering tickets to attend her event, and I want to be present in support of her during the evening that she works towards all year long, so I power through. When I come downstairs in my black backless dress with heels and purse in hand, I am surprised to find the boys seated on the couch in rented tuxedos, bowties, cummerbunds, and shiny patent leather shoes; one of them even donning a tuxedo with tails. Initially I cannot control my laughter. My side and my face ache from the wildly amusing, yet awfully sweet sight. Shortly thereafter, we hear a horn blow twice. Our handsome cab is waiting outside to take us to the gala, which today I have mockingly been referring to as our society debut.

As we are pulling up to the zoo, I secure the ankle straps of the black heels I put on in the cab. When I take my first steps out, my left foot immediately and completely gives out on me as I fall to my knees; the perfect entrance for that society debut. The boy I am seeing helps me up and holds my right arm to stabilize me. I try to take a few steps by myself, but my left foot will not cooperate. I cannot walk. The boys want to blame it on my shoes, but I know that the shoes are not the real problem.

As I struggle to walk up the front entrance to the zoo clenched to the arms of the fellas I am with, we are offered celebratory glasses of champagne. I am sure that I already look to have had one too many, and do not accept a glass knowing that it will just end up all over myself and/or my guests. We hand over our tickets to the ticket taker, who immediately recognizes that I am a Buckley, by the distinctive voice that all four Buckley daughters and my mother share, and calls my sister over who happens to be a short twenty feet behind her. I grab Ellen and embarrassingly admit to her that I just fell in front of twenty or more of her patrons exiting their limos out front; ashamed and distressed. She puts a wristband on my arm for the Patron party tent and tells me to go there and sit down.  

We walk arm in arm past the flamingos and around the colorfully lit Elephant Fountain before entering into the first part of the Patron tent designated for cocktails and hors d’oeuvres. This is the most beautiful, and extravagant event that I have ever attended. As I struggle to keep my heel on my left foot, I walk alone as slowly and gracefully as I can toward a tufted round ottoman in an intimate seating area on the far right side of the tent.  When I get less than ten feet away from the seat that I am awkwardly ambling towards, a gentleman stops me and says, “I just had to stop you to tell you that your shoes are fabulous.” I recognize the man having once been employed by Saks Fifth Avenue New Orleans where he is Merchandising Director. I am glad that he does not recognize me or feel a need to continue a conversation. I need to sit down and take these shoes off.

Relieved of the inconvenience, I tuck them away in an inconspicuous place and go on to enjoy the rest of the evening even despite the fact that I am doing so barefooted. As we stroll around the tables and booths representing every kind of liquor under the sun, despite knowing better I indulge in a couple of clear plastic promotional Lexus tumblers of Sauvignon Blanc. Thankfully, I am not successful in finding St. Germain’s booth, for temptation surely would have gotten the best of me. I drink the two glasses over a span of five hours, but I am on steroids and more importantly barbiturates where the mixture of alcohol is an obvious no-no and surely not aiding in my already handicapped physical stability and coordination.

Towards the end of the night, I take a short detour departing from the boys and take a seat on the outside barrier of the steps to the side entrance of the beautiful peristyle like structure surrounding the sea lion exhibit. I sit alone solemnly reflecting on my past, my present, and my very near future. As I am walking down the concrete steps, my left foot missteps once again and I fall to the pavement; this time I have no shoes to blame.

Sunday, May 6th, 2012

The boy I am seeing has invited a friend and traveler passing through Louisiana to stay with us for a spell. Zef, as he goes by, had arrived on Saturday in the early evening and as a gesture of thanks offers to read my cards in the early afternoon that Sunday. We have a seat around my coffee table in the living room where Zef lays down a woven tapestry before unraveling his deck from the fabric they are wrapped in. I light a candle and take a few deep breaths before he hands me his Thoth deck, one of the most interesting and beautiful decks I have ever held. I shuffle the deck while focusing my thoughts and energy, asking the universe to bestow upon me whatever message or guidance I need with regards to my very new situation.  I cut the deck and set it back on the table.

He places the bottom pile I cut on top, and then pulling from top of the deck lies down ten cards in a Celtic-Cross spread. The sixth card he turns over immediately draws and holds my attention. It is the only card within the ten-card spread that is part of the Major Arcana - “XIII : the “Death” card.

I have had a number of tarot readings in my life, but never before have I drawn the death card. I always pay particularly close attention when a Major Arcana card appears in my spread, so this is especially disconcerting to me given my current circumstance. Be it that I still have much tarot to study, and have never drawn XIII before, I admit that I am not read up on the meaning of Tarot’s most feared card.

Zef begins the reading by asking if any of the cards stand out to me and I am quick to point to number XIII. He goes on to explain that the death card is not what I think it is; it represents endings and beginnings, change and transformation. “It is the card of rebirth,” he says with quiet calmness. The reading could have ended right there, for I feel fulfilled that my question has already been answered.

The first card he points out is the “Queen of Discs,” the reversed card that he says he feels most drawn to, before poignantly asking if I am having problems with my mother or some other female figure close to me. It doesn’t resonate with me at the moment, so I resign myself to take some time to roll it over some more.

He explains the meanings of the rest of the cards drawn, which are all thought provoking and when the reading is over I tell Zef about the recent discovery in my brain, explaining why the death card was so meaningful to me. The quiet man doesn’t say much of anything at all.

After he leaves, I read about the Queen of Discs and her position in my spread. I know the card does not relate to my mother, who is the only mother figure in my life as he suggests, rather in many ways the Queen resonates more within me. I have always invested a lot of myself into nurturing and caring for others around me, and creating a comfortable environment open to those I open and let into my life. The Queen of Discs is a facilitator; quietly assisting others on their journey, though often her contribution goes unnoticed. When she appears in a reading, she represents the time when you need to take a step back and let someone else take on the load, to let others be responsible for their own upkeep, and to nurture yourself. As the self-evident den mother of my house, I believe I understand why she was there.

Alternate reading reveals; however, that when this Queen appears reversed in a reading, she foretells that the querent may encounter a woman who causes problems in their social circle and arouses feelings of mistrust.

Monday, May 7th, 2012

The boy I am seeing and his friend, who is also our housemate, started a psych band with two Mississippi boys that lived in our neighborhood. Overly excited about their new endeavor, one of the Mississippi boys booked a show at Siberia and in doing so solidified the band’s name with which the Jersey boys were especially opposed. Nevertheless, it was settled. Birthstone had booked their first show.

On Monday evening I arrive alone at Siberia. Appropriately named as it is by far one of the coldest establishments in all of New Orleans, and I mean this with no reference to temperature. Every wall in the dimly lit, grimy metal bar is painted a somber shade of ugly greige. The bar is empty except for one bartender, a sound guy, two taxidermy turkeys on the wall behind the bar and the four boys, who look nervous as they setup their instruments on the stage I once saw Clarence Henry Reid as his alternate persona, Blowfly, perform. One or two of the other bands scheduled to play that night had cancelled earlier in the day. I assume deciding they would rather have a drunken day off day in The Big Easy. 

Despite the no shows, Birthstone goes on as scheduled. As I stand a few feet away from him on stage watching him play lead guitar, my mind begins to wander as a figurative light bulb in my head turns on. Staring at him I fall completely out of love with him in a single instant.  It has nothing to do with his playing, his singing, or their music at all, but everything to do with my newly unfolding existential crisis, I realize. Taking a good hard look at him, I am reminded of the countless infidelities he brought into our relationship these past nine months that like a leech he has lived on me. Living free of charge for shelter, food and even the shirt he is wearing as I watch him sing. Taking for granted all that I have given then exchanging it with blatant disrespect while I expected what I believe to be so little in return, but I can only blame myself for expecting love and respect from a boy.

Still lost in my thoughts, feelings from the beginning of our romance rush through me. Knowing from the very beginning that this was going to be a fun ride, but like all rides, this ride would eventually come to an end. And this was it. When their set is over, the boys leave the stage just as nervously as when they went on. Some time passes, but I am not able to shake my feelings and before leaving the bar I tell him that we are through and that he needs to find another place to stay tonight and for good.

As I drive home alone, my heart is heavy, but I overall feel happy with my decision. Never did I think that I could be a person that would allow someone into her life that has the capacity to do the irreparable harm that this boy has inflicted on my mind, my spirit, and my self-worth; let alone to be the weak-willed person that takes them back after they do.

Everything, and I mean everything is changing around me. I am beginning to see the light through the veil. And, I am not that weak-willed person.

Tuesday, May 8th, 2012

When I awake early the next morning, I find him sleeping on my mid-century Danish modern sofa in the dining room. I give him a push to wake him, telling him that he is is no longer welcome here and that he needs to leave; he doesn’t move except to turn over to avoid me. I struggle with the dead weight of his body, sitting him up and loudly telling him to get the fuck out, when I realize that he is thrashed, soaking wet, and has pissed all over himself and my sofa. Furious, I lift him to his feet and nudge his wobbling body in the direction of the front door. I am gathering his clothes to put outside when he slips past me and staggers up the stairs.

When I reach my bedroom I find him getting into my bed in his pissed soaked drawers. I am full on banshee yelling at him to get out, when he turns around cocks back and punches me in my right temple. The high-pitched, shrill sound of an emergency alert goes off in my head. I am instantaneously paralyzed as I fall onto my bed. I begin my third week of knowing with a different kind of headache and a black and blue bruised cheekbone.

Friday, May 11th, 2012

Ten days after my appointment with Dr. Coranes I receive a call from Donshaneice Brown, a patient access specialist in the New Patient Office of the Brain and Spine Center at the hospital. She very briefly explains her position and the hospitals’ admittance process. Evidently Dr. Coranes has sent over my scans as well as his report, and Dr. Sujhit Prahbu has been chosen as the neurosurgeon that will be performing my craniotomy. I am scheduled for my primary visit to the hospital to meet with the doctor on Tuesday and my craniotomy is set and scheduled for that following Tuesday, May 22^nd. I pace back and forth on the front porch repeatedly thinking to myself that I am not ready and that this is all happening too quickly. I never could have expected that a surgery at a major cancer center could be scheduled less than two weeks out. I hoped that I would have had more time to prepare myself, more time to come to terms with it all.

She warns that time is of the essence with brain tumor cases, and reiterates how imperative it is that I not hesitate. Out of justifications, I accept. She goes on to tell me about the state of the art BrainSuite the hospital has and is where my surgery will be performed She very clinically tells me my newly appointed seven-digit medical record number before asking for my email address. Minutes after we hang up, I find the daunting eight-page medical history form in my inbox that I will need to fill out and return before my appointment five days from now.

Saturday, May 12th, 2012

My life has changed so profoundly within these past three weeks, but still I begin each day at home the very same way. I wake up, make a cup of coffee, open my computer, and I read and research until the sun begins to set. Unable to break the regimen I have become so accustomed to, my days remain similar to those spent in the office, but my job description has shifted into a more personal roll. Presently, I am mine own assistant and there is much business to be addressed. I have so many questions and I simply cannot know enough. However, like opening up any form of social media, this can come at an grave expense.

Over the past several days of research on brain tumors and craniotomies, I begin to feel some level of confidence in regards to what I my future may hold. As I understand it, the craniotomy will require temporary surgical removal of part of my skull. A saw that rotates and cuts bone very precisely is used to accomplish this, and burr holes are drilled in the skull to facilitate it’s opening. In order for the surgeon to access and remove as much of the tumor as possible, the scalp needs to be shaved in order to expose to the skull.

One would think that I would be filled with fear after reading all of the potential risks of such a life-threating illness and of the dangerous surgery that requires that my skull be removed and then replaced, but this is not where my fear lies. Tears well up in my eyes when I read that during surgery my hair will be removed and taken from me. This is not something I had accounted for emotionally.

Upon reading this I go into a state of panic. I am panicking over the idea of losing even the smallest amount of my hair. Filled with unnerving anxiety, I continue reading that a craniotomy scar is no different from any other scar, in that hair will not grow in scar tissue itself; however there is no reason that hair will not regrow in the shaved area around the scar. That is, unless post-operative radiation therapy is a part of the treatment plan. Further reading goes on to explain that with the diagnosis of a brain tumor, it is more than likely that I will have to undergo some form of radiation after surgery.

I immediately research and read that Radiation therapy to the head always causes hair loss. Hair will only fall out in the particular part of the head that is administered treatment and may also be experienced on the opposite side of the head where the radiotherapy beams pass through, referred to as the exit side. The hair usually grows back once treatment is complete, but may not come back as thick as before and in some people can be patchy. In some people the hair may grow back a different color or hair that once was curly, may come back straight, and vice versa.

I cannot process this news. My news-meter has well reached its limit. I shut down. I feel all life slip out of my body through the bottoms of my feet.

Shut off and seated on the mint green chair in my living room, I sit quietly in dire despair, a well of tears in my eyes. In his best attempt to relieve the utter sorrow that surely fills the room, the boy I was seeing’s friend, who is seated on the matching sofa next to me, tells me that when his mother was going through treatment for breast cancer she really came to enjoy and even miss wearing her wigs. Although I appreciate the sentiment, the idea of wearing wigs is not going to bring me any comfort. In this moment, I am inconsolable.

I recognize even through the accumulated pain that what I am obsessing over is completely superficial; it is only hair, but it is my hair. The hair that I have tailored and curated over the past ten years; learning to cut it, to dye it, and how to style it just right, in a way that no stylist or hairdresser could ever do better. Losing my hair would be like losing a part of my identity. I cannot imagine myself without it, like I cannot imagine a lion without a mane.

A few minutes pass, when my “friend” and only paying housemate, Nicole, and her boyfriend, who has his own sublet in New Orleans but for the most part is our fifth housemate, comes down the stairs and stands in the dining room of the double foyer.

In a cowering voice she says,

“Erin, I know you are going through a lot right now, but Corey and I are going through a lot right now.”

She may as well have thrust a sword through the back of the chair I am sitting in. Her voice quickly changes as she unashamedly says in a painfully irritating tone,

“I need to move out. We are going to get our own apartment to figure out what comes next for us since Corey is moving back to New York in a few weeks.”

I am left speechless by her absolutely asinine remark as she crosses the dining room to “talk” to me more about what she and the boy she has known for a month and a half are “going through.” Her reasoning worthy of comparing her situation to mine, to move out on a friend who just found out she has a brain tumor.

That sorrow I was feeling very quickly turns to anger. I could very well blame this on three separate but contributing factors, the tumor (known for causing mood and personality changes), the steroids (known for frequent mood changes), or that I am a Cancer (the sign characterized as being “moody”).

I look at her with total disgust as tears fall down my face. My voice breaks while saying,

“I just learned that they are going to saw part of my skull off, and that I am going to lose all of my hair. You kind of caught me at a bad time, Nicole.”

Trying to keep some semblance of stability and normalcy in my life, I plead her sense of decency and to give me thirty days advance notice at the very least. I cannot begin to fathom moving my whole life out of my house in the midst of preparing for all that is still yet to be revealed.