My Brain Tumor Story: Part I - III (sentence, tense, speech)

[tvdxer]

(This was originally posted on Facebook, and it is thus formatted)

It all started in the Summer of 2009. With a little networking between the director of my school's McNair Program and the Honor Studies Head at USF, I was chosen for the "Social Aspects of Hurricanes Research Experience for Undergraduates (REU)" in Tampa, FL. After a period of about a week, I adjusted to my new living conditions. Without going into depth about the REU, it is essentially a paid internship that prepares you for graduate school. An internship is a major bonus, if not an indispensable necessity, for a graduate school application.

All the REU students from outside of the Tampa area were lodged in a four-story apartment building. Other than regretting not bringing my car (that campus was not like the UM - Twin Cities campus by any stretch of the imagination) and never seeing the beach (my group only went once), it was, for the most part, a fun time, especially after the arrival of my zany Mexican roommate.

For most participants, it was the best summer of their lives, but there was a downside. It seemed like almost everybody became sick. On the first few days, a girl from North Carolina was coughing up a storm, constantly; a guy from Texas, who was the only one to pair off on the internship, comically acquired "Mono", although it was not so funny when he almost stopped breathing and spent several days in the local hospital; and, in a foreshadowing of my own experience, one girl had headaches so severe that a CT scan had to be done to rule out such causes as a brain tumor.

I, on the other hand, never got sick once, but a far more insidious menace would soon make its presence known and have an effect on my life like no other. After an unusually eventful departure day, marked both by imminent exposure to gunshots and a crazy man on the CHI-MSP flight, I came home, and after re-adjusting, began to have a headache. It was like no other headache I had ever had, although I cannot describe the difference. Sometimes intense, sometimes light, it would fluctuate through the month of August, but seemed to disappear as I went back to school in September.

I entered my senior year of university with a whole lot of hope. The elimination of the "language lab", which accounted for approximately 99.3% of my social life, was the only real downer. I was working one-on-one with the McNair program to apply to graduate schools for next year, and had confidence that I would be placed in at least one program. At the same time, I was applying for a study-abroad program in Ecuador to be realized my last semester. I would improve my Spanish to an almost immaculate level, study International Relations or Demographics as a graduate student, perhaps proceed to the PhD level, and have a splendid existence working for either the Federal Government, a non-governmental organization, or in the worst case, a multi-national.

Duluth's warm September, with its 70s and 80s, soon became a cloudy, bleak October, with highs that struggled to get out of the 40s. October 8th was one of those chilly days. I ate lunch at the computer lab, unwisely using the same hand I touched the desk with to eat my pizza. SARS was everywhere in the news at that time and a real threat. I left the lab feeling a little guilty, with a bit of a knot in my stomach. Hypochondria, probably.

About an hour later, I showed up for my Creative Writing class about 10 minutes early. I noticed the instructor had distributed short readings that I neglected to pick up, not seeing them upon leaving the last session. It was when I went, or tried to go, to get them from a classmate for quick review that I felt my right hand shaking. Within seconds, my whole arm was shaking. Soon, after seeing the room overcome with flickers of light, I was unconscious. They tell me I let out a yell and shook on the floor for about a minute or two, while somebody called 911. Then I was limp, and apparently not breathing. My face turned blue.

That's when the paramedics came and put me on a stretcher. The next thing I vaguely remember is being escorted out of the school. I have fuzzy memories of being lifted out to the ambulance, parked on a drive up a steep hill behind Mitchell Auditorium. I remember hearing the tell-tale EMS dispatch tones from the radio and realizing that I was in an ambulance. In a rather hostile tone not typical of me, I asked "Where am I? How did I get here?", to which the paramedic responded, in a firm voice, "You just had a seizure." "Seizure" and "stroke" were synonymous in my head at the time, and I had a vague idea of what a stroke was, so I did mental addition and subtraction to assess my potentially diminished cognitive ability. I soon passed into a slumber.

I woke up in a hospital bed, now fully conscious. A nurse, seeing me awaken, asked me if there was anything she could do. I asked her for a phone, and I called my mother. "You're not going to believe this...I had a seizure in class". She was petrified and immediately rushed from the store to the hospital. I was taken out on a rather superfluous wheelchair and rode home with my mom. Having brought my laptop to school that day, I fired up my old desktop when I got home, searched for "seizures", researched a bit, and sent a message to my Statistics professor about what had happened and that I would not be attending class the next day. I slept, and then slept almost the whole next day. Seizures of the variety I experienced tend to wear you out.

==

It had snowed on the morning of Saturday, October 10th. A thin sheet covered everything from our house to the St. Luke's MRI building. At discharge from my little hospital stay, I was given two appointments: an MRI on October 10th, and an EEG study on October 13th. Just in case you do not know, an MRI is essentially a gigantic magnet that can "see" into the soft tissue of the body. Conducting an EEG study, on the other hand, consists of placing electrodes on your scalp to measure your brain waves, a procedure very common in the treatment of epilepsy.

I arrived to the appointment on time, and so I proceeded to the MRI, filling out the requisite forms and divesting my person of any metallic objects. The possibility of a brain tumor entered my mind, but was just as soon rejected - tragedies like that don't happen to me! After about 30 minutes in the tube, I was done, and we (my mother drove me) were instructed to await the results. After waiting about an hour, a stone-faced neurologist appeared and told us that we had something to be concerned about. Although it wasn't immediately apparent on my first look at the scans, a large, heterogeneously enhancing mass, measuring about 7.5 cm in size, was invading my left frontal lobe (and perhaps a little of my parietal lobe as well), specifically the areas implicated in speech production and voluntary movements - "eloquent areas". "We think you have a brain tumor" were the words out of his mouth. I didn't cry nor yell nor faint, but my stoic facial expression did not signal the magnitude of my shock. These things don't happen to me. We were instructed to go to another institution - either the U of M hospital in Minneapolis or the Mayo Clinic in Rochester - today. We asked which one was better, and he replied that I would be treated the same at either.

So my mom launched into a series of phone calls. After getting my laptop out of my car, my grandmother, mother, and I made the ill-fated trip to Minneapolis in her van. When we arrived, students filled the street in full costume, celebrating Halloween three weeks early for their Saturday night festivities. We entered the hospital, where a bed was already designated for me. A neurosurgery resident came in to do a couple of tests on me, and when he pressed the stethoscope against my chest he asked, in a kind of laughing voice, "Worried?" "Yes" His seeming lack of gravity prompted me to turn on my only source of comfort - my laptop - and change my Facebook status to something like "Maybe it's not so bad after all".

And then, perhaps not even thirty minutes after, I had another seizure of the same sort as my last. It began with my right hand shaking, and then spread into my right arm. I heard the audible heart rate monitor speed up its beeps, just like in the movies. I tried to reach for the PANIC button on the bed, but could not control my arm. And then I was out.

The next thing I knew is that I was surrounded by fresh-faced nurses, probably nursing students. They were asking me questions. I tried to answer them coherently, but all I could produce was "Okay, yup, right, uh-uh, yeah, cool". Before the invention of MRI or CT, that alone would have localized my tumor.

After some testing, research on my laptop, and a lot of sleep, the neurosurgeon, Dr. Matthew Hunt, came in on the day after (October 12th) and stated in no uncertain terms that I would need surgery. I immediately consented. A date for my brain biopsy / resection was to be set, and it would be soon. Meanwhile, I would not be able to drive a car, but instead have to rely on others for rides, which was easy then, because all of us had cars (my sister had recently got her license) and the store - where my mom, my brother, and I worked - was a 45-minute bus ride from the college.

I returned on Tuesday. That day I felt like I was going to have a seizure in any place at any time - in the computer lab, in class, walking outside. I variably felt a shaking in my hands similar to the sensation that preceded both of my seizures, but I would later learn that this was nothing to be concerned about - just one of the many side effects of the outdated but still default anti-epileptic, Phenytoin ("Dilantin"). We heard the biopsy was scheduled for the 20th, and I think the last day I actually went to school was Wednesday or Thursday - school was simply too unnerving for me, even though I was on Ativan, which did help to ease my anxiety. I implored God and the saints, and suddenly almost all my Facebook statuses became religious. A priest came over to administer Last Rites and comfort me. For the first time...ever?...I was asking people to pray for me.

Those prayers would be needed for my surgery. In order to access most parts of the cerebral cortex, a craniotomy (opening of the skull) must be performed. This still carries a formidable mortality rate: about 6 out of every 100 craniotomies result in death (1), though the odds were much more in my favor due to circumstances like my age and health. (And, to be honest, I've never read an account of somebody dying from a brain tumor operation after about 1960, although I have sometimes encountered operative mortality figures in brain tumor-related literature). Still, it's a bit frightful to think that more than one out of every twenty like procedures eventually kills the patient.

(1) quality - general surgery - brain surgery - Northwestern Memorial Hospital - Chicago .

==

October 19th was the last day of the "pre-operative" me. I was driven to the school to pick something up, where I discussed, in an eerily casual tone, my imminent surgery with a staff member, and passed the other part of the day at the store, joking, fluently, with my uncle.

Then came October 20th - the big day. I woke up at 2 am, recorded a brief keepsake video on my webcam, and made the two-and-a-half hour trek to Fairview.

Upon arriving, I was weighed (at 88 kg - about 193 lbs) and my blood pressure taken. The nurse remarked, in a tone of pity, that I was "healthy" except for "the problem in (my) head". After that, several sensors were applied to the surface of my scalp. These were for "Stealth", a neuronavigation system that functions like a GPS of the brain for neurosurgeons, correlating the real-time location of their instruments with MRI and CT scans.

Next I met with the head neurosurgeon, who summarized the risks of the operation, including death, and had me sign a consent form. I was then placed on a wheelchair, transported to the the operating room, where I was introduced to the team that would be operating on me. I was intubated, with the anesthesiologist asking me to count backwards. I lost consciousness reciting the Our Father while counting backwards - a kind of task I would have much more of a struggle doing after the operation!

While I was unconscious, the chief resident (as of 2012, a full neurosurgeon doubling as an ER doctor), drilled a "fronto-parietal" incision in my scalp, and proceeded downwards through the dura mater to create a flap, exposing the left frontal and parietal lobes of my brain. The team then located my motor strip through the use of "evoked potentials" - in other words, applying light voltages to the surface of my brain and seeing if my hands moved or my toes wiggled, etc. They now knew that at least those areas were hands-off for them. With that in their mind, they made their way through my middle frontal gyrus with a suction device, through which they removed a prodigious quantity of tumor and perhaps, inevitably, a bit of normal brain tissue with it: over 100 cm^3 in total. They didn't dare venture too much to the side into my motor fibers or too low into my speech tracts.

Satisfied with their subtotal resection, they sealed me back up, extubated me, and brought me out to another room, where I awoke to the Chestershire cat-like countenance of Dr. Hunt and the relieved face of my mother. The clock read 2:30. I remember trying to speak, only to be obstructed from doing so by an endotracheal tube. A nurse then wheeled me to the intensive care unit.

Over the next 24 hours, I was poked, prodded, and examined by an endless variety of nurses and residents. I was wheeled into the imaging unit for post-surgical MRI and CT scans. KDWB, the Twin Cities' CHR station, played through the headphones they gave me to mitigate the noise of the MRI unit. That was the first time I heard Pitbull's "Holiday Inn", and that vulgar song will always bring me back to that half-hour or so I spent then in the tube of that MRI.

It took about two days to notice all the ways in which surgery had changed me. My cognition was clouded. I shed tears at the slightest provocation, even if the emotion itself was not intense enough to make me cry in the past. I could not move my right fingers, and barely move my right side. My left leg had a rhythmic tic to it, constantly shaking in a syncopated manner. I could not spit. I could not name simple objects, even though I knew fully what they were. I could not form complete, cohesive sentences, even though I could write on my laptop (pecking with my left finger), and understand everything that was said to me. I even tried "mental math" after the surgery (or the day after), but knew it was a failure when I got multiplication mixed up with subtraction. A man that once was an excellent student and a promising scholar was now a mental and physical invalid.

The more dramatic changes, however, would not persist beyond a month or two; and many of them (the unusual crying, mental math issues) were probably as much due to swelling in the vicinity of the surgical site as the actual operation itself. Subtle deficits in productive speech (especially in forming sentences, and simultaneously accessing my short- or long-term memory and speaking) and executive function (especially concentration) seemed to remain, along with a very mild residual hemiparesis (one-sided weakness) remain, although few people notice these changes, and my current anti-epileptic (Keppra) could have a role to play in this too. That seems to be the usual cost of surgery near eloquent areas.

The neurosurgeon came in the day after surgery, accompanied by a veritable troop of residents and peers. This was a moment I was awaiting with anxiety; in fact, whenever I heard a voice even resembling the neurosurgeon's, my heart rate climbed in fear that I would be told the worst, perhaps that I had a glioblastoma multiforme, the most common and most malignant of gliomas. However, I was somewhat relieved when he told me "it's one of the better tumors", an "oligodendroglioma". I had done some research on gliomas and brain tumors in general; when I last was discharged from hospital (before my operation), he said he thought it was a glioma, and when I asked him "what kind of glioma?" he said "we don't know yet." In reality, he had reason to suspect it was a higher-grade malignancy; it initially lit up "heterogeneously" on contrast, which portended that it already had sprouted its own blood vessels to maintain rapid growth. I asked the grade; he didn't know.

As an educational aside, a "glioma" is a tumor arising from glial progenitor (stem) cells. The majority of gliomas are "astrocytomas" and "oligodendrogliomas", or a mix of the two. Astrocytomas, at least in their less malignant forms, have the appearance of astrocytic cells, which act as a support system for neurons. Oligodendrogliomas, on the other hand, look like oligodendrocytes, which produce the sheaths (myelin) that aid in conducing electrical traffic between neurons. In terms of malignancy, gliomas are "graded" on a 1 to 4 scale, rather than "staged", although you sometimes hear "stage 4 brain cancer", for example, when they really want to refer to a grade 4 brain tumor. Grade 1 tumors are essentially benign, at least if operable; a complete surgical excision usually cures the patient. Unfortunately, they are the rarest of gliomas and mostly found in young children. Grade 2 tumors are almost always incurable; even if the neurosurgeon achieves what appears to be a complete resection, thousands of cells will be left behind in the midst of normal brain cells, often centimeters away from visible tumor. However, gliomas in this grade behave "indolently", often for several years, until acquiring features indicative of malignancy ("vascular proliferation", "necrosis", visible "mitoses") and transforming into grade 3 or 4 tumors, which are known as "high grade gliomas". The average life expectancy for a newly-diagnosed grade III astrocytoma patient is roughly 3 to 5 years; for a person harboring a grade III ("anaplastic") oligodendroglioma, it can be up to 7 - 10 years if their tumor contains a certain genetic signature. Grade IV tumors are the most commonly diagnosed, accounting for roughly 50% of gliomas; most research pertaining to glioma is directed at these so-called "glioblastoma multiformes" (GBM). They are extremely fast-growing, quick to recur, and therefore have a particularly dire prognosis - about 12 to 18 months with maximal treatment.

I felt relief in knowing that it was at least not a GBM. The next two days at the hospital were spent rather intensively, with the speech-language pathologist and physical therapist making regular visits. The first would bring a book of drawings (the "Boston Naming Test") and ask me what they represented. I failed almost all of them. I would see a drawing of an apple; I would know what it is, and if you were to say "apple" to me, I would understand fully. But I was not able to remember, on demand, the word, and hence would say "ummmmm...crap...uhhhhhhh". Physical therapy was a bit easier; it consisted mostly of walking, aided, around the hospital, which was a welcome respite from laying in bed.

On Friday the 23rd, I had recovered sufficiently to be discharged from the hospital. When my mother and I were collecting our discharge papers, a grave-faced doctor with a heavy Slavic accent asked us if Dr. Hunt had informed us about my diagnosis. I told him he had, and followed my answer up with "Grade two, right?" He replied, "No, grade 3", and had me sign a consent form so a team could do research on a region of my excised tumor, so "other patients" could benefit, as if I would not live to see the fruits of the research. My spirits immediately descended and I held up five fingers, as if to signal "five years" to my mother. She feigned calm as she walked out of my room and began to cry. We collected our things, made a stop at the pharmacy to pick up steroids and painkillers, and I was wheeled out of the hospital.

[BobHildebrand]

cool!