Fall's end

Fall is soon done here. It was my first real fall (in California our evergreen trees don’t wilt). I thought fall was a series of browns and yellows. I had no idea the spectrum of bright pinks and reds the leaves could change. I had no idea leaves could dance. With each gust the colors and lights refract as they circle around one another.

The brightest tree in the city stood alone behind the methodone clinic; its bright florescent pink leaves so obvious against the pale grey cement walls and chain linked fence. Even on the gloomiest days it appeared to glow.

When I first noticed her, I told everyone. Many smiled politely and some did nothing. It didn’t matter. The happiness her beauty brought me diminished any slight embarrassment my perceivably naive observation merited.

But fall, as I said, is nearly over. And my tree has lost all her leaves.

Only the small feeble branches remain as a faint reminder of a gem that many didn’t bother to notice.

Maybe next year.

Publicly emotional

I have turned into a blubbering ridiculous ball of tears.

And while a brain tumor might suffice as justification for the sudden turn to negative town. I find there is no justification for turning emo.

I spent all day yesterday walking aimlessly around downtown Baltimore listening to Pandora’s mix of sappy depressing melodic girl-- Ingrid Engleson inspired-- music. I paired my tunes with “ten minute cycle” crying. (Ten minutes of misty eyes followed by ten minutes of tears followed by ten minutes of being fine then ten minutes of misty eye another ten minute of tears, etc… )A deviation in the cycle occurred when a man asked me for directions prompting me to skip misty eyes straight to tears.  

Who is this pathetic crying girl I have turned into? I am not being the suddenly wise person that every lifetime movie told me illness turns you into. I must have forgotten to pick that up with all my paperwork at the hospital.

Movies like Beaches (Bette Midler & Barabra Hershey 1988) depict us sick people as grasping for meaning and coming into acceptance. In Beaches, Barbara Hershey’s character learns to accept her impending doom and is only disturbed with the idea of being replaced in her daughter’s eyes. Such loving care is lost by me. I care about others and slightly ache for them if something happens to me. But really I am scared for myself. I don’t want to be done. I want to see things, (literally- my eyesight is the most likely to go). I, I , I . And this, I know, makes me selfish. But seriously, you overcome the death of others. (in a functional way) You never overcome your own death.

I hate all movies with people with a deadly disease now. (with the exception of zombie movies. Zombie movies-- well some of them. Hollywood has made too many. Some are good.) I am going to admit I have not seen 50/50 (Joseph Gordon-Levitt and Seth Rogen 2011) and. I refuse to see it. Matter-a-fact, I hope to see whoever is responsible for that movie and tell them to go fuck themselves. People tell me it’s a good movie. And the ratings have been good. But the movie’s existence is enough to make me sick to the core. I do not want to watch a romanticized version of the fear of death. I am going through it. My experience doesn't have an accompanying soundtrack and I will not be dating my psychiatrist.  (unless my blubbering along Pandora counts as a soundtrack.)

By the by, other movies that share the same name include:

·         Fifty-fifty (1916 and 1926)- a husband and a wife learn that they trust and love eachother by cheating on one-another

·         50/50 (1982 Norwegian) – recent grads don’t want to work and decide to rob banks instead

·         Fifty/fifty (1992)- a comedy where two buddies (they fight a lot but learn to work together) try to kill a south east Asian dictator. ~ a truly awful movie.

My shrink even tells me that the final stage in my grief over my brain tumor is acceptance. But what exactly does that acceptance entail. Am I supposed to accept and be ok with it. I know it’s happening. I accept that I have this tumor and that I am about to undergo this incredibly risky surgery. Am I done? Am I there already?

From what I remember of the Kubler-Ross model (bear with me I read On death and dying five years ago), I think I am in the depression step. Steps are Denial, Anger, Bargaining, Depression, and acceptance.  Acceptance can be summed up with the phase “everything is going to be ok.” Which I don’t really know, so I guess I am not there.  

I am embarrassed because I feel that I am slightly over-reacting. I know that there are much worse things out there. And right now, while not having a concrete diagnosis, I have been told that most likely it is benign. My feelings are just so damn irrational and it is frustrating the hell out of me.

I want to know what’s going to happen. I want to be able to prepare for the future. But all I am getting are statistics and vague percentages from my doctors.

By the way, HUGE PET PEVE. Whenever my neurosurgeons talks about what could happen they use percentages when describing unlikely events. And fractions when describing likely events.

                A less than 10% change you will lose the ability to control your facial muscles.

                A 1 in 2 chance you will lose your eyesight.

Excuse me, doctor. How stupid do you think I am? I can do the math.

And, even though those percentages are small those risks are freaking scary.

                A 1-2% chance you die is still a chance. 

I guess I will just have to wait and see what the answers are. Two weeks in counting. Two weeks to answers. Two weeks to acceptance. Two weeks of being emo. 

Picking a neurosurgeon

In an attempt to further my depression today, I looked up statistics. Apparently, brain tumors are not as rare as I thought.  According to the brain tumor association (ABTA), an estimated 64,530 new cases of primary brain tumors are expected to be diagnosed in 2011. (Primary means it starts in the brain. It does not include brain tumors resulting from cancers in other parts of the body that has spread to the brain.) These values are extrapolated from previous statistical censuses done in 2004. In an incidental MRI study by Katzman et al published in the Journal of the American medical Association, after testing 1000 volunteers with no brain tumor symptoms, two primary brain tumors were found and diagnosed. So, brain tumors with no symptoms, like mine, are also not as rare as I thought. (0.2%)

Instead of a self-indulgent pity post, this time, I will share my step by step experience. I had no idea what to do after my diagnosis. But I did it. The following is how I did (up to this point anyway) so if you are one of the other 65 thousand maybe we can compare notes. And if you are new member of the brain tumor club, maybe you can get a feeling for what you are in for.

Step one: Picking a neurosurgeon:

 I panicked when my boss told me I had a brain tumor. The only thing that kept me from screaming and crumbling into a goop of nothing was that my boss, who is a doctor by the way, told me I have to get a clinical MRI and see my doctor. He didn’t tell me as soon as possible but c’mon. Like I was going to wait. After stopping at my mothers work to ruin her day, I drove to my general practitioner at Chapman medical center.

When I got to the medical center, it was empty. I guess they have their lunch from 1pm to 2pm instead of at noon like everyone else. I asked the medical assistant when my doctor could see me.

“Not for another couple of weeks” she explained. “And all the other doctors at the center are booked.”

Despite several minutes of me pain snakingly trying to explain that I needed to see a doctor immediately, the answer did not change. She just kept repeating with an increasing degree of impatience

“No available time for two weeks. If this is an emergency please go to the emergency room.”

And wait 3 hours for nothing, I don’t think so. Feeling defeated, I took a step back and dropped my proverbial bomb. “Look I just found out I have a brain tumor, I need a doctor so I can get an MRI and figure out what I need to do next.”

The poor medical assistant either didn’t hear me or was caught so off guard; she was convinced that she heard me wrong.

“What?!” she said louder than I think she intended. I repeated myself but the repetition was too much and my eyes started to water. Before one tear could formulate, she was feverously at the computer. After a few minutes she started asking me questions that I couldn’t give two shits about. Do you have a preference for a doctor; yours is on vacation. I didn’t. Do you prefer a male or female? I don’t. After twenty more minutes of questions that were not at all significant she made me an appointment in one hour.  Apparently, there were some available times.

I guess I should mention that my mother and fiancé were with me when I was making this appointment. They stood behind me and let me make all the decisions and plans. They took the back seat. It could be argued that they held back because they knew that’s what I needed. But honestly, it was probably because they really didn’t know what to do. Either way, I was glad that they were there. And I was glad they didn’t get in the way. I don’t know how I would of felt if they kept on budding in with opinions. And, in hindsight, dealing with the situation myself empowered me in a way that’s hard to explain. (When I say empower I mean in terms of my health care. I am not going to make the argument that it made me overall stronger because that’s just ridiculous.)

 After I saw my doctor, and after she did brain tests that she told me she hadn’t done since medical school (Apparently one of the 60 thousand have not seen her), she referred me to a neurosurgeon. The nurse actually called herself to make the appointment for the MRI and doctor-- an unforeseen benefit of being a part of a small group and a small hospital. It took her 20 minutes and she made it happen.  The next day, I was to see a Dr. Noblett at St. Joseph’s hospital and have my MRI right after.

St. Joseph’s Hospital is really close to my house and really familiar. Not only was I born there but it is where I candy stripped (volunteered in a ridiculous red stripped apron) when I was high school. The building housing the neurosurgeon’s office is right next to the freeway and separated from the rest of the hospital. Before my appointment, I did not know it was a part of the hospital until I got there.

The office itself is on almost the top floor of the building. The elevator was full when I started at the ground floor but I was the only one left when I reached the top.  Unlike other doctor’s offices, the furniture and decorations were all high end and expensive looking. Not the stale blue chairs I had seen peaking past the elevators as I stopped at each floor.

 The office was empty of patients. An excessive amount of medical assistants greeted me as I entered with smiles (weird) and asked me to fill out the standard forms. (ok they were not standard. They were really weird. Tests that I think would make any person feel incredibly paranoid. I mean sometimes I get a little itch on my face. Would you characterize that as an electric feeling?—apparently not but I didn’t know that at the time and marked the box. The neurosurgeon went over it again and it was incredibly informative. My hypochondriac tendencies, in this case, made the appointment more thorough.)   

Dr. Noblett was confident and well-spoken and really good looking; I hope my fiancé looks that good at that age. He had an incredibly calm voice and spoke in simple terms without being condescending. He began with explaining what he believed I had.

 From the images that I got from work, the tumor was consistent with epidermoid features and considered large. I did not have symptoms and for this reason I could postpone the surgery but would have to have and MRI every 3 months. Eventually, within a year, I would have to have surgery.

At this point, in the meeting, I think I kind of went into shock. My whole body went numb and, at the envy of every yoga enthusiast, my mind went blank. I guess that my fiancé and mother noticed (I didn’t mention that they met me there. They did.) because they started asking questions. And luckily they both took thorough notes.  

                I then went to get my MRI. As they bundled me up and sucked me up into the surprising narrow tube (how do fat people fit?), I was still in disbelief. I could not believe this was happening to me. By the way, MRI’s are loud and done in a really cold room. If you ever get an MRI say yes to the blankets.

                When I went home, I looked up more neurosugeons. I found them by typing in “Best nuerosurgeons in the US” into the search engine.  The first link google gave me at the time was a listing by USnews (http://health.usnews.com/top-doctors/directory/best-neurosurgeons). It was an incredibly user friendly website. I could type in my home zip code and get a listing of the best doctors in my area.

… I should note that I have no idea how this list is made. It could be total bull. By I had nothing else to go by, so f it. …

Ultimately, I picked 3 additional neurosurgeons: Dr. Yu at Ceder Sinai, Dr. Linskey at UC Irvine, and Dr. Young at UCLA.  I went onto each hospitals website and called and made appointments.  Here was my experience:

Dr. Yu: As soon as you walk into the narrow waiting room you are accosted by a large glass placard naming large contributors to the center. I was in a place paid for by Denzel Washington, Oprah Winfrey, Forest Whitaker, and the Kardashian foundation among others. It really threw me off. I have a brain tumor. Why the fuck do I care that these famous people made themselves and their accountants feel better by writing a check to this place? As an added formality, all the individuals checking me in were dressed in matching black suits and working in visible cubicles. My brain tumor had been graduated to a Hollywood business interaction.

 I filled in my paperwork and agreed to pay out of pocket for my visit; Dr. Yu does not accept HMO insurance. We sat in the tiny narrow lounge with no windows. Unlike my experience with my local neurosurgeon, I was not the only person in the room. There were several elderly people with drooped faces (looked like they had had strokes). None were reading the three hundred copies of sport illustrated or golf available. They all just sat there taking turns staring at each other. I guess I was sort of doing the same thing.

                After about ten minutes they brought me into a small examination room. A neurosurgeon’s assistant came and did the function tests on me.  (Apparently that triangle rubber thing to get your reflexes to work actually has a purpose.) She then took a medical history and as quickly as she came in she left.

For two hundred and thirteen minutes nobody came. My fiancé, my sister, my mother and I just stared at each other, counted the seconds, and twiddled our thumbs. I memorized the two posters about strokes posted on the walls and read each pamphlet next to the sink. My fiancé got increasingly more nervous, pacing the 4’ by 4’ room to the best of his ability.

When the neurosurgeon finally came, he got right into talking about my tumor. He never sat down. And instead of speaking to me he spoke directly to my mother. He explained to her the difficulty involved in its removal (mainly because of its location) and his nervousness about causing any permanent damage. He told MY MOTHER to wait and watch the tumor and not to have surgery. (WAIT!!! Did he not know there was this unwanted mass in my brain!!!) And worst of all he told HER that he, even if I chose surgery, would not be able to get all of it (he estimated being able to remove only 90%).

I was surprised at his recommendation. And his disregard of me for that matter. The neurosurgeon at my work and my local neurosurgeon wanted to get the tumor out now. The shock wiped my mind blank. After he gave his ten minute run down, he asked if I had any questions. I asked a few. All of his answers were short, quick and nonspecific.

Before I knew it the neurosurgeon shook my hand and left the room. The whole interaction was so quick it made my head spin. Then I got my bill. And my head exploded. They charged me the full time I waited. A 3 and a half hour visit. I couldn’t believe it.

Realizing their error the black suited businessmen of the office would call me to refund part of my visit. BUT!!! Cedar Sinai would later recharge me for this visit an additional four times. On accident, they realize each time I call them but still.  In short, there suited medical assistants suck.

***I would later find out that Cedar Sinai has been having a huge problem with Staph infections among their surgical patients. Apparently, to save money they have switched from stainless steel to nickel plated equipment.

Dr. Young: The neurosurgery office is on the basement floor of a small building separate from the hospital. The furniture, carpet, and walls were all a pale shade of blue. (Go Bruins! I suppose.) The neurosurgery and neurology waiting rooms were separated by a half wall. The neurology side of the room was full. The neurosurgery side consisted of me sheepishly longing to not be the only person sitting there.

                Everyone who works there appeared to be in their late twenties and early thirties. (Including my neurosurgeon) Alarm due to the youth quickly dissipated with interaction. The boy checking me in was patient and helped me fill out my paper work efficiently without being crude or condescending.  A young lady came and pulled me aside and while taking my blood pressure asked me if I had any preferences toward my appointment; if there was any information I would like to give in privacy away from the people I came with. The attention towards my privacy and desires was incredibly refreshing and immediately put me at ease.  Then after a quick ten minute wait the neurosurgeon brought me back to the room and began my appointment.

                His age or my familiarity to doctors’ offices gave me a huge push of confidence during this appointment. I asked him poignant questions and was quick to let him know my priorities and concerns. I pushed him to get as much information as I could. (The day before I actually goggled questions to ask him and picked what I felt was important.)

                He answered most of my questions thoroughly. But his descriptions of my tumors consistency and appearance varied greatly from the others which prompted me to ask “How many tumors like mine have you operated on?”

                He answered, “That is not the right question to ask. Instead you should be asking me if I have done surgery in that part of the brain before. The answer is yes, many times.”

                I did not like this answer and pushed to get some sort of indication of experience or familiarity. He wouldn’t give it to me. And instead gave me text book definitions I had found myself after googling my diagnosis. I have to give ti to him though. He was incredibly confident when he gave me these answers. 

Dr. Linskey: The UCI medical center is across from a large outdoor mall and right next door to a juvenile detention center. The Neurosurgery office is the first floor of a building almost fully made of windows. UCI had over-nighted my paperwork to me and I had filled out the same forms I had been filling out the past week before hand. I waited about 20 minutes and a nurse brought me into a small room to take my vitals.

                Shortly after she left, a medical intern (about the same age as I—25 or so) came and did all my function tests. She was incredibly bubbly and almost obnoxiously positive and smiley. While her demeanor annoyed me, her interaction with my neurosurgeon was strangely comforting.

                Dr. Linkskey is a short chubby man with little chubby fingers. When speaking to me and going over my images he sat in a stool at my level and spoke directly to me.  He was able to treat me like an adult while making me feel like he would care for me like his child. He care and comfort with his young intern seemed to confirm my feeling.

                But probably most importantly, he said he could get all of the tumor out. He listened to al lmy concerns and was willing to consider them in making decisions. He didn’t make me feel silly or uncomfortable. This was my longer appointment; an hour and a half but almost the most conforting. He didn’t dumb down language that he thought I wouldn’t understand. He did not try to use metaphors. (Neurosurgeon’s metaphors are a great reason for conspiracy theorists to believe that they are stupid and useless.) And he answered all my questions directly.

               

Ok, so here is my quick assessment of all the neurosurgeons

Neurosurgeon	Hospital/ description	Pros	Cons
Noblett	St. Joseph’s Medical Center/  small private local hospital	Personable. Kind. Patient. Treated me as an adult.	Unfamiliar with my type of tumor. Small hospital with fewer resources. My surgery doesn’t happen there that often. Nurses at the hospital are notoriously unkind.
Yu	Cedar Sinai / large Hollywood private hospital	Big famous hospital of the stars. Fancy looking rooms. World renowned neurosurgeon(according to US news).	STAPH INFECTIONS COMMON AMONG SURGICAL PATIETNTS. And incredibly insincere atmosphere
Young	UCLA medical center/ large public highly ranked hospital	Great personable staff. Best (according to ranking in USnews) neurosurgery hospital near me.	Inexperienced neurosurgeon. I don’t want to be the one to pop his epidermoid tumor cherry.
Linskey	UCI medical center/ medium sized public local hospital	Kind. Personable. Friendly. Experienced. Neurosurgeon ranked highly (according to USnews.)	Smaller hospital.  The neurosurgeon appears to go on vacation a lot.

I picked Linskey.