Brotherly Love

A few days after I got back from California, I bought the plane ticket to Duke. I hovered over the “Purchase now” button much longer than I have over almost any other purchase; for something I sat over a computer on my own to do, it felt awfully (and I mean awful-ly) momentous. This despite the fact that I was actually buying a triangular ticket, one to Barbados, then to Duke then back to Austin. I figured after all the high wire material of the last 3 months my wife deserved a break. Barbados was really different than any place we’d been to since our honeymoon, Aruba. It was an island with no real culture and appeared that time mostly would be filled with sitting on the beach. My wife grew up in Hawaii, she’d picked the island and there we would go.

A day or two after that my older brother Alonso came to visit. Unfortunately, like too many people who came to visit, I had scheduled medical appointments around their visit. I felt awkward about doing this but not knowing how to schedule time off for both medical appointments and to spend time with people and still to preserve time off, this seemed like a good trade off. We met with my new neurologist for the first time, someone who had been described as a brilliant Argentine, Dr. Perurena. He was by far the liveliest of all the doctors I’d met with. As he went through my medical records he visibly grimaced, shook his head, made noises like “hmmm” “blah blah blah.” This immediately endeared me to him; while I understand bedside manner and its purpose, for me I’d much rather have a doctor who was, well more like me, fairly explicit and direct. The “complaint” I’d been told that his patients often had was that he over explained things; this was never going to be a problem with me. He came across as a cocky guy who was confident of what he said and was the only doctor, including the neurosurgeon, who would be doing the procedure who said “You made 100% the right decision. Trust me. I’m not a demagogue.” He kept using that last expression so often it made me wonder why but there is no good way to ask that question. He was also impressed with the fact that I’d gotten access to the guy at Duke and congratulated me on that like I’d won a prize. He met the measuring bar that I had set for all my doctors; he was okay with me putting off brain surgery to run a marathon but he added to the list of things I’d have to do during the weekend of the event. We did another EKG, still showed as normal. Several EKG’s from 20 minutes after the seizure until this one…still everything showing normal. Why was I doing brain surgery again?

We also went to a vasectomy appointment that day; I wasn’t having one quite yet but apparently you have to have a pre appointment before you’re allowed to have the procedure. The doctor asked standard medical questions but said he’d never quite gotten answers like the ones I’d given him. He became the 7th person to know someone who had known someone with an astrocytoma and the story again ended the same way, with the person dead within a few years (though it was the longest at seven or eight years). For the record, my wife and I had been talking about not having any more kids for a while. The issue was not settled but this latest of medical complications settled it; even if everything went perfect I wasn’t expected to have that long of a lifespan which seemed unfair to both another child and to her. The vasectomy doctor said if it was his wife, he’d be telling her to stay on birth control or to get a procedure done herself. I told him after all I’d be going through this procedure was a joke. We set up an appointment for late April.

My brother and I kept joking through the various appointments and then he took me to my running group. Once it was all done, something started upsetting my stomach and I ended up vomiting until past 3 in the morning. I had to wonder if it wasn’t psychosomatic from one of the doctors having talked to me about how radiation occurred more than 50% of the time after this procedure and that the biggest side effect of it was near constant nausea.

My brothers and I had communicated more since this diagnosis but it’s tough to accept that as quality time. I mean look at this visit: a day off…spent with family…at medical appointments…and then feeling sick after? In fact, I never got to say goodbye to him because I was asleep recovering from vomiting. My brother handled it all with grace and always let me feel like I had dignity. Still, how many days in my future would be this pattern? I hoped not many but I didn’t know since I wasn’t a demagogue.

Californication

It was relieving to have the decision made and then it was time to go on my California vacation. It was an intense trip where over 6 nights, I slept in 6 beds, went to 9 cities (though some right next to each other), rode in 14 cars and saw a few dozen people. It was a privilege to have people be so gracious One of my hosts, Shelly, I hadn’t seen since I was 19 and despite her space being fairly sacred to her, she let me sleep on her futon.

While I had lived out there for five years, the fluidity of life made it so that the people I saw were not only from that time but from as far back as high school and as recently as a year before the seizure. I don’t know what it is like to run for office but it has to be something similar because I had just announced where I would be for a meal and invited people. Each time people showed up with hugs, support, memories…with humanity. It was an odd trip because with a short exceptional outing to the Getty, the trip was pretty much spent driving between meals.

I was both flattered and humbled by the people who showed up. I hadn’t seen some of them in over a decade and some just a couple of months before but there they were, all showing support. When I’d lived in California was when I was a college student and/or professionally employed as a pastor and so most were people from that era of my life. There were stories about how I was there for people during significant life events like funerals and hard times. It was good to remember having been there for people when it was hard since now so many people were doing it for me but the two stories that stuck out to me the most were from two young men who were teenagers when I was their pastor (I was 20 at the time). Curt had been struggling with Spanish in High School while I was there and I tutored him most evenings for several weeks. He went on to pass, minor in Spanish and live in Spain for part of his college career. Ruben reminded me of something I don’t even remember: once his mother was unloading groceries and he was just standing around and I ‘reprimanded’ him for not helping her because she deserved it. He said ever since then he had unloaded the groceries every time for his mother. His mother, coincidentally, also came to one of the dinners.

Nicole, the doctor who had visited Austin, gave me a ride to Northern California where I saw Steve, the guy who in many ways has been a father figure to me. We had a meal and a few hours together. It was frustrating to be spending so little time with people who meant so much to me but there were also so many people to see and I wanted to guard time off in case something went wrong with the surgery a few weeks later. I saw church members, college colleagues, and professors. Five college professors came to see me, three of them stating that they still used a paper of mine as an example for various reasons (2 of the 3 for a way to look at something from a different angle).

I had visions of what my life might have been like when I saw Lindsey Painter and her husband, Jason and Heidi, two couples who were now married and still living the pastoral domestic live. Jason and I had some very intense conversations as he drove me around that afternoon. He threw out a question that threw me off then and I still don’t have a good answer to: listening to how you talk about all this, I don’t know how to pray for you, how should I do it? Weeks later I still don't have an answer.

I was so moved by all of these people that I immediately decided I’d do a similar tour of everywhere I lived if I could. I couldn’t go everywhere I’d lived (in 30 years I had lived in 9 different cities and 4 different countries) but I’d try to make at least some of the ones in Texas. London, Mexico and the South Pacific were probably going to be a little difficult. But even if it was going to just be the California tour, I became aware that if I had to choose between the relationship with these people or avoiding brain cancer, I’d take the brain cancer every time. I’ve done plenty of things wrong in my life and probably always will but seeing those people, knowing that years after they’d seen me they would come out and be so kind… I had to have done at least one or two things right.

All In

The poker game was on Sunday night, Monday was a holiday, and I left for California on Wednesday. My wife said she’d tell me by Monday night which side she had decided. Initially, she said that she had come down on the sitting and monitoring it side. She had handled everything with great grace from the first moment (though losing five pounds initially showed that it stressed her out more than she let on) and this was clearly difficult for her. At some level, it was likely tougher on her because the consequences of whatever happened to me would weigh heaviest on her and Kiana.

At the poker game the night before, I had explained everything. I was grateful for all that had been done and mentioned it: my friends had held a fundraiser to help with my medical bills, people had brought groceries, several people had been very creatively thoughtful and bought gift cards for my wife and I to “continue going on dates” during a stressful time, the tattoo was still in the works. But after thanking them I pointed out to them and they knew it was true that the only thing I had asked for in the past 2 months was the one thing I could not legally do, I had asked for nothing besides rides. If I had the surgery, I would need their help because the doctor said that for some patients they get up, take a shower and shave and that’s all the energy they have for that day. He mentioned this lasts usually about six weeks (though he added that someone with my medical stats and reported energy level might be bugging him to get back to work after just two weeks).

I obviously had no way to know how it would go but, and this is when I started crying, that I would need their help. We had no family in town; they were my family. I asked them to make sure that someone took Kiana to museums or to the zoo, to make sure that someone took my wife to the movies or dancing. I wanted them to make sure that my wife and daughter kept being ‘human’ not just the cancer patient’s daughter and wife. I pointed out that I would likely still not be asking for much help directly and highlighted a point from one of the cancer advocacy brochures. Everyone is asking what can I do, the people who were helpful were the ones who said this is what I can do and did it. I didn’t know what circumstances people were in, what their time resources were but also knew that if I asked many of them would try to do it but I’d never actually ask because I feared being a burden, feared people would help out of obligation. I told them, if you want to help, say something like I can babysit Tuesday night and my wife can go to the gym, or I have Thursday off, let’s spend it playing with Kiana.

Someone later that evening pointed out that when I spoke about brain cancer, brain surgery, my own possible death and complications it sounded as if I was discussing an oil change, no affect, no nervousness, no fear. Then I talk about how this might complicate Kiana or her mom’s life and that’s when I cry. I appreciated the honesty where they said they would likely share the second approach but could not wrap their mind around the first. The simple truth is I’m a Hispanic male or whatever stereotype you want to label me with but I’ve been helping people out my entire life. I was supposed to be the reliever of stress, the one who assisted, not the one that created stress, the one who needed assistance. Failing at those things was what moved me, scared me.

My wife weighed in last, the day after the poker game. She had, as had I, initially been on the side of monitoring it and if and when there were more symptoms besides this seizure to react then. She eventually made the argument that the entire time she’d known me, since I was 17; I was never about the past, so who cared if my memory was slightly less effective. I was about what was next, the next project, the next dream, the next trip, the next race, the next tournament. “You live in the present and in the future and are unbound by the past and I can’t imagine anyone taking that out of your brain.”

I told her I would sleep on it and let her know in the morning but the truth is that when she said that I was sold. I woke up the next morning and told Duke I would be there the week after the marathon and I haven’t looked back since.

Both Sides

It has  been joked for years that I make decisions by committee. While that’s not accurate, it is true that when weighing big decisions I often get a lot of input, believing there’s merit in the wisdom of my friends. One of the blessings/curses of being me is that I can often see both sides of an issue clearly and see them both as legitimate. I fully embrace the old adage that if you don’t understand the opposing argument, you don’t understand your own.

There was a clear argument to be made for both sides. Take surgery now and likely increase survival time but risk immediate and severe complications. Even if the surgery went perfectly, it’s not like I’d come out the same. Take surgery later and have the complications be gradual and perhaps do surgery if and when it grew. However, MRI’s couldn’t measure all the ways that it grows and it could be growing “invisibly” and by the time you noticed something, it may be too late. No matter which path you took, there was no way to know if you’d ever made the right decision…so basically like marriage, career choices or pretty much all of life’s significant decisions, no way to know. Now with those type of decisions, people in general end up talking themselves into believing they made the right decision but reality is that we just don’t know. We make a decision and go with it and tell this tale of the ‘right choice’ for self comfort.

Which one to go with and how to go about it? I created a poker game which I labeled the “All In Poker Night” with a graphic of Homer Simpson’s Brain on a poker chip. I invited about 100 people to ‘come”. Some of these people were in places where they could obviously not make it within a few days time but I stated to please call me or talk to me to weigh in. The night of the poker game, 25 people showed up plus a few of their kids. About that many would call me between the time I announced it and the actual poker game. My wife had decided she would also listen to all of this and weigh in last (though she admitted that her initial inclination was to monitor it and wait) I took the opposite position of wherever the person I was talking to; I was rather amused that 4 different people (2 on each side) pointed out that it was clear that I had already made up my mind about the opposing decision. This either showed my great debate skills or my ambiguity.

I held this poker game for two reasons: 1) to see if real people came in more cleanly on one side of the equation than doctors had and 2) if they came up with angles I hadn’t thought of. As I listened to each person’s opinion, I weighed their motive. Some were clearly basing their stance on fear; fear of death, fear of disability, fear of being ostracized. Obviously there was no “not being scared” but I had decided early on that I would base this on hope, hope to try to keep my life intact as long as possible, but which one gave me a better chance of that was still not clear. I always judged their lifestyle; I was proud to have a range of friends, atheists, devout people, republicans, liberals. That kind of stuff didn’t weigh in very much but the stuff I weighed was where these people who were active or was the highlight of their weekend football and movies. Were they people who were putting off their dreams until x happened or were they ones who attacked their dreams now? How did they handle finances, family, fun? I think however people want to get through their lives is up to them and there are many valid ways to do that but it would be less than honest to say that people whose lives rhymed with mine held more weight.

Real people didn’t come in much differently than doctors; a few didn’t weigh in but the ones who did came down with 9 in favor of surgery, 8 in favor of monitoring it and surgery when there was noticeable growth/more symptoms, and 2 in favor of doing nothing and it killed me when it killed me. The angles/interesting point that I hadn’t thought of that were come up with that night were: 1) “Are you ready to make the decision if you become disabled that you actively did this to your family?” 2) “If it was me, I would do the surgery but you’re so dynamic you should monitor it.” 3) “If it was me, I would do the surgery but have a hitman in place in case something went wrong.”

The joke that was made all evening was that whoever won the poker game got to make the decision. In the end the final two had a similar pile and decided to split the pot…and of course by coincidence/destiny, one said they would do surgery and one said they would monitor it. Split pot, split decision, splitting headache.

Results

Due to my pushiness, results came in fast for all of these procedures. The doctors ended up split on their decision: 5 doctors said that I should do the surgery; 3 said I should monitor it and do the surgery if/when it grows.

The neuropsychological report stated that I was in the superior intellectual capacity (that’s not relevant to any of the diagnosis but I thought you should know). It also stated that the results seemed to indicate that I likely already had decrease in memory; however it also stated that I was in the 91% percentile of memory so that suggested I had room to spare.

Both of the neurosurgeons weighed in and said that it looked far enough away from my language areas (apparently there are 2) where if the surgery went as it was supposed, there would likely be none or only a minor deficit. The biggest risk was to short term and episodic memory (one said 10 to 20%, the other said about 15%, in my mind they were saying the same thing; episodic memory is remembering events). However, the doctor from Duke, the neurosurgeon who did Ted Kennedy’s surgery said something that was very interesting. He said that some of that memory may already be gone and I may have already adjusted accordingly. This was, in its own way, good news because if it was already gone, well if it was already missing now, I wouldn’t miss it. My wife took this as vindication that all those times we’d argued about whether or not I’d forgotten something, this news proved she was right…at least that’s what I think I remember her saying.

The other thing that was interesting was that the neuropsychological report stated that it appeared my self perception was inaccurate: “utilization of denial as a psychological defense against anxiety.” I was amused that a guy who would blog about all this (and beyond that let people read a lot of a very private and not always complimentary reports), who would move all his appointments up and who would create his own medical team not just the ones recommended to him by others would be considered in denial but fair enough.

The doctor from Duke said that he thought he was probably buying me 10 years but that didn’t mean I wouldn’t be dead a year after the surgery or live twenty years after it. He thought we should do the surgery and that we should do it in the next 2 to 3 weeks. I told him I hadn’t decided whether or not to pursue that route but that I had a marathon in 5 weeks and if I did surgery, we would do it after that. He grew on me a lot that day when he answered: “That increases your chances of having a seizure because of dehydration and exhaustion but I still think you should do it. Those type of things are important” He was clearly a doctor who understood that life was about more than just breathing, my kind of guy. I told him I was going to take the weekend to talk to my wife and friends and we’d decide which way to go and I’d get back to him after that.

So now I had all the information… by coincidence it was a 3 day weekend coming up. Which gamble to take? The gamble of brain surgery of the gamble of letting it sit in your head while doing nothing. Chemotherapy and radiation were not pre-surgery options. There didn’t really seem to be a way to win since surgery would be a “60 to 80% reduction at best” so I wasn’t coming out cancer free. This was an all-in move, a big wager that I was going to have to bet my life or much of it on? How does one make a decision like that?

Half Asleep

A few days after the neuropsychological test, I had what would be the freakiest procedure I’ve ever done: a WADA test. It’s a test where they go in through your femoral artery and do an angiogram all the way up to your brain. The short version is they go through your groin and run a pipe all the way up to your brain (thus proving what we’ve always known: that men’s brains and groins are connected and it only takes a few seconds for them to communicate). They put in some barbiturates and it was the first time I “felt my brain.” It was a warmth inside my head.

They then put half off your brain to sleep at a time. They have you do some memory tests, some language tests and you’re holding your hands up. When they did the right side, the side that my tumor is not on, I was still able to get all the memory and language question rights. The left side of my body was paralyzed and the arm and hand I was holding up fell (though I did not notice). A few moments later, everything was back and then they were going to put the other side to sleep. They were hoping that I would lose language functions when they put the right side of my brain to sleep. About 85% of humans have language in their left temporal lobe and about 15% have it in their right temporal lobe. The statistics are similar for some memory functions. The hope of this test was that I fell in the minority because if that were true I would have a lower chance of losing speech and/or memory functions if I went with surgery.

They then put the left side of my brain to sleep with the barbiturates. Because I had not noticed my left hand falling asleep, this time I watched my right hand this time. It was weird to watch it “fall asleep” without me having any control or sensation. Out of curiosity, I grabbed it with my left hand and felt it twitching, something I could only feel because I was holding it with the awake hand. And while I was focused on that language was gone… When I had initially been told that an inherent risk of this tumor and/or surgery was losing language capacities, I had misunderstood. I thought it meant I might not be able to talk but could still read and write; this test showed me it was language itself. What was going through my mind shortly before they put in the barbiturates was: “I’m thinking in words, I’m thinking in words. I’m…” and then it was just blank. I had awareness, still recognized people and tried to absorb the room. Cards with words were shown to me but they were meaningless; people talking was uninterpretable noise. I had enough wherewithal to look at the doctor and laugh a bit in a way that meant ‘so this is what it’s like’ except I could not have put together that phrase. I imagine it’s got to be similar to the way animals or children interpret the world before they acquire language. It was freaky both to have it happen and to imagine that this could be a permanent way of life. So the hope that one of my languages would be in another part of the brain did not occur. The nurses, like in so many medical procedures, said that I had been the calmest guy they’d ever seen through this, the I was the one with the most positive attitude. I’d heard phrase so often I was starting to think I was rather unique or that this was like a standard line in nurses repertoire.

After the procedure, the doctor said that I had to go sit in a hospital room and be monitored for a few hours because they had gone in through the biggest artery in the body. My friend Dave sat there and hung out in the room with me and we just chitchatted. The nurse was coming in every fifteen minutes and looking at where they had closed it. This was a bit unusual as your femoral artery is right next to your nether regions and every fifteen minutes she came in to peak under the sheets where I was wearing nothing. Then, something happened that I’m not creative enough to make up.. It was shift change and these two young cute nurses both come in together and explain that it’s shift change and that the other girl will be monitoring me now. They then take a look at my unclothed groin and the exchange was:

Nurse 1: Looks good huh?
Nurse 2: Looks really good.

Then they left to me and David giggling like 7th graders. Maybe you could interpret that as them talking about the sutures but we chose to interpret it differently. Telling friends about the procedure later the jokes just kept getting worse later. My friend Dre had the best one which was that if I did the surgery I should write not this head on what the nurses had admired.

I went home and was told that I needed to lay off running for a few days. Exerting the energy/effort could make the suture come open and since it was internal, I would be bleeding for a few seconds without seeing it, pass out and die of blood loss in a very short period (I took a few days off running). So I had a little bit about extra time to think about the fact that it was a possibility I would not be able to understand those type of important directions or our juvenile. I’d picked such a stupid part of the brain to have a tumor…

Medical Rush

January 5th would mark the beginning of 8 doctor’s appointments in eight business days (six for brain stuff, two for IT band issues). Now, that may not seem that big of a deal except that two of them took up the entire day. The doctors would all call and say hey we had an opening tomorrow, can you make it etc? Each time thanks to the generosity of my friends I would be able to find a ride to and from there. It would be a week full of interruptions for daily life but those interruption would provide me all the information I needed to make a decision by January 14th to decide how to best proceed. I typically make New Year’s resolutions but in 2011 I made one for 2012: to receive my first paycheck of the year before having my maximum out of pocket insurance payment.

The first appointment was an eight hour neuropsychological test. It was filled with solving puzzles like finding what was missing in a picture, typically something as small as a one stripe on a road, or one picket on a fence. I had to spell things, spell them backwards, repeat things, repeat them backwards. This continued with more items like a personality exam, closing my eyes and seeing if I felt being lightly touched, touching my finger to my nose while having my eyes closed, recognizing things on the periphery of my vision while looking straight forward, finding numbers in the middle of rows letters as fast as I could, defining words, saying as many words as I could think of that began with a certain letter, an IQ test etc.

The tester and I didn’t click from the beginning and it continued to show throughout the day. I was actually on the phone when she took me out of the lobby ten minutes before I was scheduled to go in. Arguing with my insurance about the fact that neurosurgeon who did the biopsy was not on the insurance and that therefore they didn’t want me to do follow up with him. They would pay it initially since it had been through the ER but follow up was a different story. This was at best illogical in my mind, that I should follow up with someone besides the guy who had actually been in my brain. Rudely to the lady I would be spending the next eight hours with, I didn’t cut the conversation off but finished it while she was setting things up in her office. I didn’t even get a courtesy smile when I made a cancer joke after finally getting off the phone (with a minute to spare from our actual appointment time). During the entire time, I tried to figure out each exercise to figure out what it was trying to test for. Part of the reason I’d been Valedictorian and graduated suma cum laude was because sometimes getting a good grade was as much about figuring out the test as it was about knowing the info itself. A couple of times throughout the day, she gently (but clearly annoyed) nudged me to just take these tests without any extra effort into that. Being a psychology major and having some knowledge of this stuff, I knew that some of it was open to interpretation and that when the psychologists and the patient don’t click it can skew results. Still, she seemed a consummate professional so I trusted that it would be fine. Eight hours later I left and was told the results would be forwarded to my neurologist and neurosurgeon. I could also have a follow up with the psychologist as well. That follow up would be an hour long and would cost me “just the office co-pay.” For that small of an amount after all else that was being billed, it seemed a bargain.

The MRI was not too long after that (still no growth), EEG was still normal, met with two and some three of almost every profession (neurologist, oncologist, neurosurgeons, neuropsychologist). Each time I took all the records that were immediately done and left a notice that I wanted everything sent to me as soon as it was ready. My initial neurologist receptionist seemed annoyed by that request and said that most patients don’t ever ask for that. Another receptionist was also frustrated with how insistent I was about moving things up and said she’d never seen a patient who tried to have so many appointments so quickly.

Each doctor I posed the same question to. The options I asked them to consider were 1) do surgery now or 2) monitor and if when it grows do surgery then. The options to me included a 3rd… do nothing and if when it killed me, it killed me. I didn’t propose the 3rd option to them just the first two and asked “If this was your child or your significant other, what would you recommend?” Some of these doctors took it in stride, some were a little taken back, and one would not answer it phrased that way, he only wanted to think about it in regards to my case (that was my last visit to him). I needed them dealing with a human being not a disease and then recommend something based on that.

This was all so bizarre. I was spending many of life’s resources, time, money, emotions on something I couldn’t remember. This was all due to a seizure I had which was a blank in my mind. I have no memory of this, the symptom that was causing all this hassle was something I could not recall and had I been slipped a sleeping pill and woken up with an EMT over me telling me this, I’d know no better. And over that I was supposed to consider brain surgery?

Drinking and Driving

Part of the problem with the new job was that it was a 24/7 venture because it was where recently arrested kids were processed. Since all my medical appointments wouldn’t be until after the New Year this job kept being an in your face reminder of the condition inherently, this was even more frustrating because I wasn’t able to get anything done but still being reminded of it. It even affected my holidays since I would have to work some of them. Being the low man on the totem pole and because it wasn’t my coworkers fault that I’d been reassigned there, I volunteered to work both the Christmas eve and Christmas day holiday. With good intention, coworker friends kept on with the barrage that I should just have a better attitude about the job but gave me no tools to do so. I finally came up with an analogy that made sense to a few of them. Imagine your significant has an affair and your job puts a picture up of who they cheated with on the wall of your office. No it wasn’t the person itself but it was an 8 hour reminder because this job was all due to this...plus it was a reactionary job so you couldn’t do anything unless something was happening and the holidays were slow allowing me to do little but stare at that picture sometime.

Going to my running group, going to my wife, being with my friends, life felt normal. Being at work, life felt cancerous and it was exhausting. The last work day of the year I was supposed to go to my running group and the person giving me a ride that day wasn’t there when I got off work. I called and sounding a little buzzed, stating they forgot and were at a happy hour. They were incredibly apologetic and offered to come get me. I passed on the offer as it wouldn’t get me to my running group on time by then and I didn’t want anyone breaking any drinking and driving rules. I couldn’t call my wife because she had left town earlier that day because she was going to spend New Year’s with her sisters at her parents. I thought about calling people but just tired and discouraged, I decided I’d walk home, all 8 miles of it. It took me almost as long as it had to run my first marathon. Part of that was walking through traffic etc and part of it was that my pace was a downcast one. It was frustrating to have my emotions have these wild fluctuations within days and know that my medical appointments would be starting January 5th and dragging through February 11th before I’d even have enough information to make a treatmet decision. There was a point in the walk where I just looked up into the air and screamed with anger. I went home and just felt asleep dejected and alone.

The next day was New Year’s Eve and I woke up in my usual sunny disposition. Part of the privilege of being me has always been that nature has been kind enough to where I almost always wake up ready to go and in a good mood. I got up and took medication, balanced my checkbook, checked email, facebook etc my morning rituals. By coincidence, I looked at my calendar for January and every single thing on it was a medical appointment and it immediately took the wind out of my sails. Internally, I immediately decided this couldn’t be my life, just dealing with a medical condition and nothing else. Since I’d decided that I had a medical problem, I was not a medical problem; less than 20 minutes later I had gotten on line and bought a plane ticket for mid January to California (where I lived for 5 years), I would go see friends I had not seen in years. I also called every medical office that I had appointments over the next 6 weeks and told them I wanted to move them up to as soon as possible. Some were able to accommodate me and give me new appointments; others said they would call me after the New Year if anything opened up. Some were complicated because they depended on each other.

I spent the rest of the day researching my conditions, doing laundry, ironing, researching my condition, calling friends and family, researching my condition, watching some movies, researching my condition and learning abou doctors and procedures. I read blogs of people whose family member had things like this (some were encouraging, most were not), I read about experimental studies, I read stuff about when is the ‘best’ time for parents to die in regards to how it affects children (statistically speaking it is far more measurably traumatic, especially for girls, for their parents to die during adolescence than early childhood). I rechecked things like median life span for people who had this (4 years for those who don’t do surgery, 7 for those who do, wild outliers on both groups, which is why they used median numbers not average).

Then the sun started to set, both literally and figuratively on the best year of my life. I had invitations to multiple New Year’s party and had let many friends think I was going to the other one when my plan for a couple of days had been to do nothing. It was the only New Year’s Eve I’ve ever spent alone in my life. I just had this gut feeling that a year which was going to start the way 2011 would, well it didn’t feel like anything to celebrate. The other thing was that invariably this was still new enough to where people who weren’t up to speed would ask and there’d be people who weren’t that close and would have to deal with the awkwardness of someone having to talk about cancer at a party. Plus, this was New Year’s and while I made the joke that this year I would need both a designated drinker and a designated driver; I really didn’t want to be a hassle on people’s party night. I’d save my ride request for another time.

I went to bed about 10:30 but my wife called a few minutes later. She had skipped her own celebration to stay on the phone with me till about 12:02 AM. Reminding me why I’d married her, she didn’t talk about much but was just company and celebrated New Years with me in her own way. She said Happy New Year and let me go to sleep moments after and whispered “I love you and we’ll find a way to make it a happy year, I promise.” I didn’t but I could have drank to that.

White Christmas

I was hoping to find a little more peace from the Thanksgiving family event where I had invited everyone and not one of them had come. I have these great memories of Christmas from my childhood with aunts and grandparents and uncles and cousins. It is what I would call big Mexican Christmas. We kept it up for a few years after moving to the USA but after a while we started having more what I would call a “White Christmas.” It was smaller, more intimate with just the immediate family there. I love my immediate family but as social as I am I’ve always appreciated the other gigantic approach so I tried inviting them all again.

Christmas Eve and day came and grandparents were the only ones in town. For what its worth I was very proud of our parenting when maternal grandparents showed up with some of their presents and Kiana’s response was “I get presents for Christmas!? But it’s not my birthday, it’s Jesus!” Now regardless of the religious implications, I was glad that our daughter, 4 days away from being 4 years old, had not (at least not yet) developed a view of Christmas as a materialistic time.

We continued our three traditions this year. (1) Christmas Eve we read ‘Twas The Night Before Christmas’ and (2) put up an ornament representing the most important event of the year. This year was one of the more vigorous discussions we had about what the ornament would be. By all accounts, 2010 was by far the best year of our life in many respects. Kiana, her mother and I had all connected better than before as a family and also the individual connections. Kiana's mom had gotten a new job at Easter Seals which she was really enjoying. We’d trained and run a marathon on Valentines day. It was the year Kiana and I had traveled the most (Chicago, New York, Philadelphia/New Jersey, Italy, Cancun, Toronto). Kiana had started at a new school. Also, there was this brain cancer thing that had come up and one of the things we talked about was putting up something representing all the support we’d gotten over the last few weeks. This was heavily considered but eventually decided against because we committed to making sure that this cancer hadn’t earned “that much attention.” So in the end, the ornament was an American Airlines plane ornament. We had flown them for all of our trips and deciding that this best represented those pages (“the world is a book and those who don’t travel read only one page”) and the friends that we had seen, traveled with and made on those.

(3) Saturday morning we read the Christmas story and opened gifts. Due to some unexpected year end bills, we had gotten less gifts than usual but we had some help from family and a good friend, Susan Poulos (the tattoo lady). She must be Ms. Claus because she nailed down exactly some of the things Kiana had asked for her birthday that we had not yet gotten her. On the parenting note, before Kiana was allowed to play with any of her toys, she had to clean out several toys that were then driven over to a children’s shelter.

Anyway, I was happy about all this but still a little sad about only having seen my parents but then Boxing Day happened. One by one, grandparents, several of my aunts and uncles, cousins all started arriving the day after Christmas. They wanted to give warm embraces, laugh. There were some heavy talk some more about the religion thing and how God would heal me. I accepted their prayers but also told them I wanted to continue worrying about the living and the dying would take care of itself. This helped me make some peace about the family gap since now for the first time many of them had been to my house (without exception, everyone who was there I’d been to their house). I appreciated the connection and realized maybe I needed to keep feeding it and perhaps the fact that this was their first visit to my place was as much if not more my fault than theirs. This was an opportunity to keep those connections open. These thoughts would come later. At that point, I just enjoyed that we had some great tamales, menudo and a variety of Mexican food. We had so much fun I forgot to pick out which outfit best lets me don some gay apparel. It was a Merry Christmas.

Force of Nature

Trying to regain balance was hard to nail down. I realized that while most of the people at work were being less than “human” in their approach to me, that they were at the end of the day just doing their job and following some directive from above them. I also realized telling them to have more “humanity” might be better if I was showing some of my own. I’d been pushy and flagrant. So it being Christmas time, I went and got one of the HR ladies some chocolate, my previous boss , my current boss and my director a bottle of wine each. The HR guy who had given me the criminal trespass warning I went and shook his hand as we had had no interaction since then. I saved the best for the person who I probably thought had the lowest human approach to this, the Deputy Chief. I brought her a vase that we had purchased in Costa Rica. It appears that both a human and a non human approach are contagious because without exception every one of those people showed some humanity when I presented them with gift. There were hugs and I hope I wish you wells and the closest thing I had ever from the Deputy Chief approaching humanity. She stated awkwardly that she hoped that I would find treatment in 2011, that I would beat this thing and that my family would do well.

I didn’t do anything for the chief, she hadn’t gotten back to me yet and she was the one who had the authority to make my job be a good thing instead of a forced thing. She got back to me a few days later and politely blew off my request. I went to the bathroom and cried for a while and then headed back to intake. Many people thought from that day forward “my attitude” had improved. It had and has not because that the job was still the biggest symptom of my cancer, one I had lost the battle to. Still, it wasn’t the fault of my new coworkers so I started being less withdrawn and bringing in food or buying them breakfast tacos. That being settled help me make some mental decisions: I had medical appointments starting at the New Year until February 11th. The holidays stopped many of medical procedures unless I wanted to go with any doctor instead of the ones I’d come to trust. I decided that I would not let intake just sit indefinitely, that by the end of February I would decide which path to pursue medical treatment and/or start looking for another job. I decided to focus on the marathon and continued doing the physical therapy for my IT band. I’d continue pursue the good people in my life and to appreciate them.

The marathon became bigger quickly. Many of the “what’s next’s” in my life had been cancelled or postponed. The marathon I could still train for or so I thought. Saturday I did a 10 mile run and was able to keep a solid pace and it helped me gain some confidence for the next day, my first 20 mile run. I even called a friend who in great kindness said “Iram, you’re going to be fine with all this because you, you are a force of nature.” When the next day rolled around I was going to my friend Dre’s house and I couldn’t even go a mile because of my IT band. I walked another one to academy and tried every contraption they had to stretch it, hold it, warm it up. With each one I would get on a treadmill and after only a few steps the running was too painful. I walked the way home, once again crying. Dre called and said he was willing to come get me and we’d go do lunch. I had so little composure that I had my wife call him back to tell him I was just going to do some other stuff and couldn’t do lunch.

I sat frustrated at home for a few hours… then I started stretching, then I got a ride to take me to buy new heavier more stable running shoes. After that I had her drop me off a trail near the house, which is slightly over a 1 mile loop but because it was dirt and flat; maybe it would be easier on me. I told her I was going to try to do the 20 miles there but I had my phone and when I couldn’t go any longer, I’d give her a call.

8 miles I was crying again but from the pain. Both the doctor and the physical therapist had said that this was an injury that I probably would not make worse by continuing to train, just more painful. They even suggested I take 3 weeks off and that I’d probably still be able to do the marathon. I had answered immediately that at this stage I may well need the training more than I needed the marathon. Still, I kept going on this run, grimacing and every few seconds telling myself “I am a force of nature.” 12 miles later, I had done the worst 20 mile run of my life but it was done.

A friend of mine had remarked that knowing me I would irritate and annoy the cancer into submission. Who knew if I’d beat it but I had plenty of fight left in me. Even if I had to force things that once came natural to me like being kind to people who I thought were only considering liability or if I had to push for a run that had been easy the year before. I got home from that run and collapsed to my wife stating“I was wondering if you were still alive.” Until I wasn’t, I intended to keep pushing, sweat, tears and pain be damned.

Stretched

In the middle of all this, my IT band started hurting. I didn’t know what it was specifically at the time since it just felt like pain in my hip and in my knee and since I was marathon training some day to day pain was…normal. My runs started getting harder each day and after only a few days I headed to Austin Sports Medicine. That was the quickest I’ve ever been to a doctor for an injury.

I’ve had a few sports injuries over the years and now I had a brain tumor. Without exception, they had all been on the left side of my body. Left temporal lobe tumor, left groin, left shoulder, and now I had a pulled/stretched left IT band. I couldn’t help but think of the Latin word sinestros from where we get our word sinister, which comes from the Latin word for left. I was really loving the right side of my body right around then. I went to see my doctor and when he came in and asked what was going on I said “Since we last saw each other, I’ve gotten brain cancer, had to give up two sports, my job has reassigned me to a crappy position… I’ve got something going here which is causing me a lot of pain… you’re going to have to make one hell of an argument to get me to stop running.” With a lot of sympathy he offered a cortisone shot. My response was automatic but I was pleased with my immediate response: “Is that cheating?” I wanted to keep marathon training, to have something to look forward to but I wanted to be honest. I turned down the cortisone shot and asked if I could do physical therapy first and we could revisit it after a couple of weeks.

Work kept draining me from day to day and the stress of that finally started keeping me awake at night. I could sleep fine with brain cancer but committing 40 hours a week that took more out of me. My wife and I started arguing more because I was being a pain and I started withdrawing more. She poignantly stated that if she had to lose her husband early she wanted it to be to cancer not to discouragement about my job. She stated for me to be smart and to be cautious but if I needed to quit my job even if that reduced my income and got rid of my health insurance, she would understand. She even hinted that she would embrace it because she knew her husband needed a job that mattered to him.

My IT band, my job, my finances were stretching my marriage, my emotions. It was time to regroup, to refocus but there was no clear path.

Unreasonable

The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man. George Bernard Shaw, Man and Superman

At that point in the story and since then, I had only had two symptoms of this brain tumor, the first being the seizure that started it all. The second symptom was the fact that my job based on my driving restriction had reassigned me to Intake. I had lost my initial appeal with the Deputy Chief and so made one more to the Chief herself. I have always had a lot of faith in the chief, believing that she really has a more flexible approach but I knew she was in a tough spot. Here was this “front-line” employee trying to get things reverse coursed, to be an exception to the way they had approached things. The short version is that where I work by its nature, a juvenile correctional facility is fairly rigid. It would take an incredible act of humanity and grace to let me back at my previous job. The chief is often quoted as saying that she looks for reasons to do things not the other way around but I’d heard too many people kindly or not so kindly said that was just her political approach; her actual approach was not quite that. I didn’t have enough experience to know whether or not that was true but I knew that to overrule the counsel of county attorneys, her own deputy chief, and her human resources department over just one employee was probably more political capital than most anyone would be willing to expend.

Still, I tried to give her as much help as I could. I got my own attorney to come and help me with it. I also went to downtown Human Resources, the department that supervised the entire county rather than just our small independent HR department. I got more letters from attorney and even got one of the judges who stated he was willing to speak on my behalf. We had a meeting where it was once again pointed out to me that there had been many conversations about this decision. I responded with the fact that not one, not one of those conversation had been with me. I added, for dramatic but heartfelt emphasis, that I treated the juvenile criminals who had raped their sisters, robbed people’s houses, abused people in various fashions more communication than the department I had given five years of my life had given to me. I even added that they were the biggest change in my day to day, that they were a reminder of my brain cancer, the worst part of my daily life. I actively told the chief to have more humanity. Her facial expressions suggested to me that she probably wasn’t used to being spoken to this way and I concede that may not have been the smartest thing I ever did. (There was some relief in knowing I’d never been interested in being promoted because I had probably just assured it would never happen). There were two meetings with attorneys and human resources people and myself and the chief. In the end, she made a few concessions, none of which felt significant. She stated that it was a mistake for the department to have brought me FMLA paperwork in the hospital when I had never requested it and that practice would continue. She stated that if and when I was cleared to drive to let the department know and that unlike previously stated, we “could see” about my previous job rather than me having “to apply for it like anyone else” as had been originally stated, that the job description would now be changed “to explicitly include driving” (this felt more like the department wanted to make sure to cover itself). She added that this was “not an accommodation but a reassignment” and it was “best for me and best for the department.” The last part was awfully hard to swallow as I personally was at a job I was not well suited for and the department now had an empty Spanish speaking spot with English speakers covering cases. Some of those cases were really struggling with their new PO and a couple of them had called me directly asking for help. It had been hard to tell them I was no longer able to help them.

More than a few coworkers noticed my misery and questioned my jostling with the department. They said that during a time and economy like this I should just be grateful for a job and health insurance. They said I should just improve my attitude and accept it. While those points were all perfect valid and legitimate, they were at some level inadequate. Inherently, they didn’t fit with what I had decided to do in fighting for life which was to keep the life I had which included a job I loved. Also significant when they tried to use my daughter to guilt me into “accepting this,” I quickly blew that off. My parents had not brought us from Mexico so that we could have a job that just got us more stuff. I think that unless times are truly desperate, and at this point I am/was broke not poor, jobs really should fall under one of two categories: 1)they are something you believe in and the paycheck is a bonus or 2) the pay is good enough to allow you to do what you want when you’re not at work. I think approach 1 is a much more significant thing because you usually spend 40 hours or more at a job. I don’t get 40 hours with Kiana or my wife or anything/anyone else. We are what we do. Not we are where we’re employed but we are what we do so we should value those 40 hours… because life’s most valuable commodity is time, not money. I don’t care whether Kiana becomes a janitor or a brain surgeon but I want her to look forward to her job on most days because its part of who she is.

It was perhaps most amusing to me that some of those same coworkers who were telling me that I should have a better attitude were the ones that were so amazed at my “great positiveness” about brain cancer. This was the least logical of things in those few months. So I should have a bad attitude about the inevitable and what’s out of my control, cancer but I should just accept something that I could quit and walk away from at any time? I kept going to work for that time making sure to never be l ate, scheduling my medical appointments where they conflicted with work as minimally as possible, hoping that the chief would let me go back to a job I'd love for 3 years.