Monday, January 31, 2011

Always Dying

I had long said that life was a joke with death as its punch line. People have always misunderstood what I meant by that, as if I was thinking that life had no value or provided no information. In my view the best kind of jokes are intelligent, they show something informative, they highlight truths but the general irreverence demonstrates that maybe we take its subject too seriously. That’s how I view life; we take it too seriously because in the end as the old proverb goes no one gets out alive. I often point out to people when they’re stressed and ask what was stressing you out six months ago. Nineteen out of 20 times they can’t remember…which demonstrates how important it was.

It was certainly coming true with the amount of information coming in that my odds of getting to be an old man were dramatically reduced. This didn’t bother me and more than a few people pointed out that if they had news like this they would be more distraught than I ‘appeared.’ They often said that with a tone that said that I was clearly hiding something. They could accept that I was very different than average in many respects but that I had to be the same about the fear of dying. I never got a great response to this other than to say “Well, you’re dying too. I just turned out to be more efficient.” The fear of death is not logical to me… I can almost relate to the fears of the great unknown etc but at the end of the day it’s just part of life, granted the last part. I see death more like going to the bathroom, something that’s an inconvenience and if you’re having a good time, you try to put off for as long as possible but in the end, it’s going to happen one way or another.

Anyway, I began to talk to a few cancer ‘survivors.’ Unfortunately for me, when I talked to people the vast majority of their stories weren’t helpful. I kept referring to their stories as “archetypal” which was a polite way of saying stereotypical. Cancer, for all the people I’d talked to at that point and this one, was many of their first awareness of their own mortality, the first time they’d feared their own personal death. As condescending as it may sound, I’d never feared death. During my first couple of decades I was clueless about it and thought I was immortal. Then, in my mid twenties, I had stopped being a pastor (that’s a long story all of its own and if this blog doesn’t cure your insomnia, the one about how I stopped being one will). From then I’d taken the perspective that death was unavoidable. I had written back then what’s on the side of this blog “I want to stone the saint of lost causes. I’m going to die someday and I’m trying to live along the way.” I was 25 then, in great health and in a happy marriage. It wasn’t a statement of depression or frustration; it was a goal. When I was 20, shortly before I had gotten married, we made a list of things to do. People kept asking if that was our bucket list but it wasn’t… we’ve always called it the dream list but in the list itself, written by a 20 and 19 year old version of ourselves, we state that we wanted to envision our lives and realize that we had led it not the other way around.

I wasn’t and am not afraid of dying but I’m very frightened of not living, afraid that this would eventually make me a shadow, an echo of who I am. These wins helped me be encouraged to fight for my life but fighting for life kept meaning holding on to who I was and what I had November 4th, the day before the seizure. Fighting for my life would never mean trying to keep breathing while giving up significant portions of “Iram.” We can argue about what significant portions are but I was rather frustrated by those who would argue with me that this viewpoint was incredibly selfish. They said it was incredibly egocentric that I “wasn’t thinking” about more time with Kiana. Those who said that I should be willing to give up very significant parts just to have this particular moment decades away. In their mind this would be more than worth the misery. This argument was illogical to me because there was never going to be a point where it had been enough. I would never be like okay I’ve spent enough years with you to my wife, my daughter or any of my friends. There was never going to be a convenient time to die but today, today was always a great time to live.

So anyway, the wins inspired me to fight more actively… figuring out what that meant was a long way from being clear.

Win Win


A few hours after that half marathon, I went to my last league soccer game. If we won the game, we won the league and while we were down and discouraged at half we pulled it together and pulled it out. Simple truth is that I did very little that game to contribute because, I am probably the weakest player on the team and because I’d run a half marathon that morning. However, this trifecta of wins over the weekend was encouraging because they all were their own type. The tournament gigantically eased my financial worried and showed me how much people cared, the half marathon showed me there were victories that could come without me even focused on winning and the soccer one showed me sometimes you get to win just because you have the right people around you. I would have said no to the tournament, I nearly gave up during the half marathon and providing cheering may have my biggest contribution to soccer. Sunday night I kissed my wife softly on the head and hoped that with the right combination of these type of things at least she and Kiana would be okay. If that was true, then probably everything was okay/

While the new and incredibly frustrating job began, the wins just kept coming for the next several days. My follow up MRI showed no growth (this could be slightly deceptive as this astrocytoma has ‘tentacles’ that could be invading tissue and not be visible). However, it showed that my magnetic personality was still intact because they had to put the machine on overdrive. Okay maybe that’s not a great joke but the one my friend Bernie made wasn’t bad: that maybe I’d been lying about my balls of steel this whole time. (Apparently MRI’s can really creep people out when they feel that claustrophic. That was never a problem for me; I’d freak out during the needles and then fall asleep during the MRI’s). Either way, the lack of growth seemed to indicate that this wasn’t wildfire and even if this was what was going to kill me were talking in terms of years. If there had been growth within that short of a time span, we’d be talking about my life more in terms of months.

I met with my neuropsychologist for a preliminary appointment; he said I came across as ‘amazingly asymptomatic’ and said that my being fully bilingual (Spanish and English) plus having a fair share of 3 other languages (Hebrew, Greek, and Marshallese) might increase my chances of recovering language if we did pursue the surgery route. Images of me coming out only speaking one of those languages would create some awkwardness pretty much no matter which one of those came out.

Along that surgery route, the Livestrong Foundation had connected me to the Robert Tisch Brain Tumor Center. This was by all accounts one of, if not ‘the’, best brain tumor center in the country. This, I would later find out, was where Ted Kennedy had gone to get his operation. This was an incredible endorsement as the senator I’m sure had no shortage of finances or research resources. So I sent them an email asking how this would work and what it would take for them to look at my case. The first person to contact me from there was not some receptionist or nurse practitioner, the case with all my local doctors. The first person to call me from Duke was Dr. Henry Friedman the lead neurooncologist himself. He came across as incredibly confident and not at all intimidated by cancer (too many of my doctors did… somehow the overconfident approach, more echoing my own approach was comforting). I’d later google him and see CNN interviews where he essentially scoffed at cancer. However, he said that before they’d look at anything they needed to know that I was willing to come to North Carolina, to Duke for treatment. He quickly diagnosed that I wasn’t ready to fly somewhere that far for treatment so he told me to think about it and get back to him. It wasn’t that I didn’t want the best but to be so far away was daunting as I’d come to realize that part of the reason I was so okay about all this was because there was an ever present supporting community. We got off the phone and I realized he’d given me more of his time on the phone than any of my doctors had at that point. Still, I often advised my friends against getting too emotional quickly in a long distance relationship…

Friday, January 28, 2011

A Better Half


The day after the hat tournament I had a half marathon. More than a few friends had suggested that if they were going through something like this they would go to therapy. I had consistently disregarded this as I felt that my friends were more than enough ears and advice. I had also continued to do the running (cheaper and in my opinion better than the talking cure). Each run was getting a little easier but I still wanted to keep a conservative goal of keeping about a 6:50 pace and finish in approximately 90 minutes. The year before I had done the same half at 91:37 so I figured taking off approximately two minutes was a reasonable goal, a little over 10 seconds per mile. Besides my marathon schedule required a 17 mile run that day so when the run was over I was going to have to get back on the course and run an additional 4 miles. The joke had been made a few times that I was running away from my brain cancer… well it that was true then the tumor better be fast.

I started, as is my custom, much too fast but usually I correct that somewhere between the half and 1.5 mile mark. I did not correct it at and at mile two I was still going at about a 6:35 pace. The training group I was part of, the Ship of Fools, had the first water station and we cheered each other on. On this very hilly course and for the next several miles there were these 5 guys who kept passing me up on every down hill and I would pass them on every up hill. After a couple of back to back tough hills around the eight mile mark, I never saw them again and I was still holding that 6:35 pace.

At about mile 10 ½ I started to cramp up and slowed down very dramatically. I got passed up by two guys and I pride myself in not getting passed in races but I really blew it off. I started accepted that I had made that running rookie mistake of starting too fast, the old fly and die. I’d finish this race and that would be that… I put my head down and just started jogging till I noticed my wrist and caught my Livestrong bracelet in the corner of my eye. Then I took in my entire outfit and it turned into one of those strange coincidences that almost seemed to be by design. The shirt I was wearing was my Ship of Fools shirt, the group that was helping me train and was being kind enough of to pick me up for every workout and take me home after, I caught my wedding band and thought of my wife who was being amazingly supportive and so realistic. I looked at an arm band I was wearing, a VC one and at my cap, a Riverside Ultimate one and remembered the ultimate community that had carried me so high the day before. These guys weren’t helping me so that I’d pansy out. Right about then my Ipod started playing Valio La Pena, a song that translates into It Was Worth It.

So I turned it back on, passed those two guys and finished in 1:26.10 (five minutes faster than the previous year and a personal record). Immediately after finishing, I turned around and ran the four more miles. When I got back in the second time my friend Jonathan comes up and says “Hey you want some good news?” I shrugged yes and he said “You won your age group!” I’d never done that. The wins kept coming. That day I made a decision that this marathon training was all of a sudden the parable of my life, I had to keep it up get to that Austin Marathon and finish it. There would be hills and challenges and literal pain but you had to leave it out there and then perhaps do something extra at the end. Perhaps a bit after the extra, you’d learn that you had exceeded your own expectations, your own hopes and had victories that you hadn’t even dared to dream of.

Surreal



That month of my life had some surprises, too many of them bad but one was a great one. I had run ultimate tournaments for a while and now had one named after me: Iram J. Leon’s Memority Celebrity Brain Tumor Awareness Pro-Am Fun Ultimate Hat Tournament for the Cure. My friends had in less than a month planned and executed a hat tournament to help with my bills. I found out when they announced it to the public and was a little annoyed and questioned why they had not asked me about this. They pointed out correctly that it was because I would have said no. But they proceeded anyway and while annoyed I was appreciative of it.

The day finally arrived and it looked incredibly promising. The tournament had filled up at 136 people. A friend had come from Pennsylvania, another from Chicago, another driven 8 hours each way (in one day), several from around Texas. The weather was gorgeous with a high of 76 in mid December. The tournament organizers had come up with a funny name for the tournament and a hilarious round of team names: J’s mom, Martha, Kiana’s grandma, J's wife’s mother in law, J’s hot wife, J’s adorable almost 4 year old, and J’s hot cousin.

This led to some of the best/most awkward cheers with the ultimate crowd keeping their irreverence. Some of my favorite/most uncomfortable cheers:
• Martha has a great personality.
• Nobody beats J’s wife.
• J’s mom's not a virgin.
• Let’s score on J’s wife.
• J’s wife is hot. J is not.
• Is the grandma a cougar?

The teams in the finals were J’s hot wife and Martha. It was my mother vs my wife, the epic battle of my life ;). In the end Martha won out in a good game and the finals comments were as funny/inappropriate: Martha likes it on top/J’s wife got sloppy seconds.

VC Ultimate, an organization that makes great jerseys and that I had always used, was kind enough to have donated some jerseys that went to the MVP of each team. Then the tournament did the fundraising presentation. Houston Ultimate had done their own drive and raised $888.88 and the Austin Ultimate organizing crowd raised over $8000. They said the vast majority of players had donated extra. In addition forty people who hadn’t played from as far as both coasts had also made donations. Having run some charity tourneys of my own (best one raising about 2 grand), I was blown away by this as my expectations were much lower. As they presented the two checks (gigantic fake checks), I was bowled over. Before that day, I could tell you the very few people who had ever seen me cry. Before today, there were only a couple of times in my entire life where I was speechless. Today they both happened simultaneously. I had been asked to prepare a few words and I had some one liners prepared but I couldn’t remember them and simply in the midst of tears thanked the community for the privilege of being part of them, said that I hope no one ever goes through something like this but that anyone who does should do it with this much support and then finished by saying something that in retrospect was not well thought out: that the winning team would be me and the other team was cancer because I was playing to win.

In talking to people throughout the day about cancer, repeating the jokes that I’ve been making for a while, hearing all these cheers and getting all this attention, it turned out to be the most surrreal day of my life but one of the best. That week had been the roughest in some ways but it ended on an incredibly high note. Not merely because the finances were less stressful but because I’d been humbled by the giganticness of people’s heart. Everyone kept saying that they loved that I was in good spirits, positive. I can’t imagine how anyone would be anything else: it takes a lot of effort to get to the bottom of a pile of dozens of people holding you up. It's much less energy to just be carried. My friends, my family they would elevate me, uplifting me and as high as they were supporting me, there was no way I could get to the bottom.

I had a win.

Pleading




I had had a lot of faith in my job that turned out to be disappointing and misguided. During that quarantine time I had been getting assigned cases that somehow I wasn’t allowed to talk to. However, I took this as a good sign that eventually they expected me to be able to work them (guess it turned out to be the old left hand doesn’t know what the right hand is doing). I had hoped they would remember that during my initial interview I had said “I’ve come here to work with families long term,” during a follow up interview for a more specific caseload I had said “I came here to carry a caseload and want to keep doing it.” When a higher up had encouraged me to apply for a management type position, I said “I’m here to work with families when I’m ready to stop doing that or need to make more money, I’ll go somewhere else.” But the department forgot that or didn’t care and decided to send me where I wouldn’t carry one.

I requested an appeal and it was set up for the next day at 3:00. While I had little time at all to think or prepare for it, I did what I could. I asked several attorneys if they were willing to write a letter on my behalf. One didn’t say yes deciding to stay out of internal politics, an answer that was more than acceptable; another did something that did bother me: they said yes but then didn’t write it. Still, I went in there with several attorneys letters stating that I should be allowed to continue as a court officer and that was a better use of my skills…because it was.

I handed these to one of the deputy chiefs and she was kind enough to put them immediately to the side without reading them and essentially said in official type language said that due to my inability to drive, I was a liability. I pointed out that my job description didn’t include driving and that was less than a day’s work in a month times but it was quickly apparently that liability won the day. I argued to give me a chance to continue at my job and if I couldn’t do it to fire me. I would ride the bus or do whatever was necessary and if I didn’t complete all the tasks at the same level I previously had within the same 40 hours then they were welcome to to fire me. My arguments fell on deaf ears that felt as if they had no humanity. I had worked here for five years and absolutely loved it; I’d mentioned to friends that I intended to retire from it. That day I seriously questioned how I had missed that we had so little concern about their employees. In my mind it would have been one thing if I was asking for help but I was merely asking to be allowed to do my job with exactly zero accommodations. The initial human resources contact should have been a clue but perhaps the bigger clue was that when I was in the hospital Joe and David, my boss’s bosses had visited and had said that “this higher up and that higher up” send their greetings. That might have been true politically but when I visited for the Thanksgiving lunch and since I had returned to work, not one of those people who had “sent their greetings” had managed to even say hello. During this appeal, the conclusion essentially ended with me being told to clean out my office and report to intake on Monday. I hated this very quickly because I’ve long said you are what you do. If you run, you’re a runner, if you smoke you’re a smoker, your job is part of who you are because its 40 hours or more of what you do. Now my job a huge part of my identity was a symptom of cancer.

Everyone for about a month had been asking how I was sleeping with my answer being: “With my eyes closed, how are you sleeping?” This diagnose hadn’t disrupted me much because I’d been living life the way I wanted to…it wasn’t the fear of dying early that finally disrupted my sleep, it was the fact that I’d be robbed of life well in advance. I turned to a couple of friends that night, crushed from that appeal and said “I need a win.”

Thursday, January 27, 2011

Quarantine

I was having way too much time to reflect on what was going on. My job had me in quarantine for almost nine business days before they finally got back to me. The main problem appeared to be in the fact that I wasn’t cleared to drive. The short version was that in the job I had driving was A) not technically in the job description and B) not a big part of the job, less than a day’s work in a month. Thinking that government bureaucracy was the cost of delay, I tried to mind my P’s and Q’s at least better than I usually do. During this time, they had me sitting in my office not allowed to work with kids or their family. Interestingly enough they kept assigning me cases that I couldn’t talk to so I did paperwork. I kept up with all the paperwork they gave me but it allowed me a little bit of time each day to do some research.

Some of the info in my research was less than comforting. The short version was that this diffuse astrocytoma was rare and we didn’t know what the hell we were doing. All reputable websites suggested that experts disagreed or that treatment was controversial. This would eventually be the case with my own doctors where they ended up not agreeing on whether to pursue surgery or to monitor it in the meantime. The anecdotal information, always a powerful motivator wasn’t any more helpful. Two people’s fathers had experienced this, someone’s brother, someone’s mother and a friend’s daughter. Every one of the stories ended the same: the loved one died within a few years at most. While Nicole had inspired me to go from casual to playing to win, suddenly what winning was becoming very unclear.

In the midst of this, during this down thinking time, thoughts sometimes went dark. I had already finished my ultimate career for the time being, perhaps forever. While it was comforting to have gone out “on top,” forced retirement was still eating at me. Now as I looked ahead I realized that I was a few days away from my last soccer game, a game that probably I shouldn’t return to no matter what since part of the game itself was hitting it with your head. I also realized that something else would have to go. My wife and I had planned a trip to Brazil in March for Carnaval. The tickets had been purchased for months and many of the activities had to be prepaid because this is their highest tourist time. Some of the things were completely nonrefundable, others I would have to cancel pretty soon or they would also be lost. With depressing and worrying thoughts about the finances, with some resignation to the fact that this was going to be robbing me of some of my life, I cancelled the flight to Brazil and email the vendors that I hoped would return some of my money. So ultimate gone, soccer about to be gone, Brazil gone… I hung my head at my office and realized I was getting tired of having brain cancer in a hurry.

So just twenty minutes after I’d made the last cancellation request, the director of my department stepped into my office and said that juvenile probation had made a decision. I was no longer in quarantine, effective Monday (this was Thursday at 4:50 PM) I was being transferred from Court services to intake services. This meant I went from having my own office and slightly flexible hours to working in cubicle land in an area that was literally locked down 24 hours a day. That 24 hour part meant that now some of the holidays would be ones I’d have to work. Most importantly I would go from having a caseload where I would work with kids over a period of time to where I was now the guy who processed kids and made decisions about them when they were arrested. This is like the ER, an important job, but a short lived one. If I had been a doctor, I would have been a general practioner, someone who works with people over the long haul. Where I spent my time volunteering were long term projects almost always… I’m a long term guy and now my job was becoming a reactionary one.

So now the next trip was gone, the sports were about to be gone, and now my job was gone. Everyone kept telling me I needed to be fighting this cancer but that was a discouraging day. That night I had probably the darkest thought of this journey: If this keeps chipping everything anyway, what is that one is fighting for?

A...kward

The short version is that part of being me has always been comfortable making people uncomfortable. I'm that guy at the party who doesn't shy away from bringing up the controversial stuff, no hesitation introducing significant topics like politics, religion and sex and no pause in playing devils advocate. Sometimes this has gotten me some labels that were probably well deserved because of me creating the awkward situation.

I guess the universe decided that turn around was fair play because the awkwardness started turning itself around on me. I very quickly decided anytime this topic came up to avoid it, not so much because I was uncomfortable discussing but because I was uncomfortable with other people's discomfort. Human beings have a hard time dealing with change and death and unexpectedness... this only included, you know, all 3 of them. So anytime anyone asked anything about it, I gave them as many outs as possible. For example:

"I heard you were in the hospital."
"Yeah I had a seizure."
"Is that better now? You on medication now?"
"Yep, haven't had anymore."
"So you epileptic?"
"Nope, I ended up with a growth that caused it"
"What type of growth"
"A diffuse astrocytoma"
"What is that"
"It's brain cancer"
"Oh...uh...well...I hope that turns out okay. I'll see you later"

Those were awkward enough conversations but the ones that were even worse were the ones were it was dropped off in the end of a normal conversation and turning it into a very surreal conversation. A friend prone to drama goes on for 10 minutes about the latest boy in her life and how he's doing this and that without missing a breath or a beat. As I have for a long time, I listen and try to empathize along the way saying "I'm sorry," "That's too bad" "What a jerk" etc. But then she throws the whole conversation for a loop when at the end of all the drama story she says "But that's nothing compared to your brain cancer." Months later I still don't know what the correct response would have been to that.

Another friend, a little inebriated, complains about something they thought I had done wrong while running the celebration tournament. She goes on for quite a while about how the format wasn't good for her team. After a few minutes of what can be kindly described as bitching, she tipsily walks away and says "Oh and I'm sorry you have brain cancer." At least she had walked away...

The scenario that was most common was that I would tell people and they would immediately seem depressed and I had the awkward responsibility of comforting them about my brain cancer. Obviously I appreciated immensely that they cared but this was a new role for me so I was still learning how to do it. I had been asking my running group for rides without much explanation when one of the girls came up to me and said
"I heard about your DWI accident."
"I didn't have an accident, I had a seizure"
(exchange giving her outs occurs but finally tell her I have brain cancer)
She looks at me and immediately breaks down crying in the middle of track warm ups where we are going up and down the track doing things like skipping, over and unders, running backwards etc. She puts her hands to her face, over her mouth and cries with more conviction than my wife had at this point while talking to me. Not knowing what else to do and being human, I reach out and hug her and she cries into my shoulders for a few moments while people are running up and down the track... Luckily this is during winter and its dark so a lot of people miss it. I feel horribly bad for making her feel this way especially since we've had less than a half dozen conversations.

During those type of moments I wonder if maybe I should have kept all of this to myself in order to not make people feel bad.

Saturday, January 22, 2011

Split Check

In the midst of this imposed quarantine at work, checking the mail got old fast. I'd been in the hospital for six days and the bills just kept coming. It wasn't quite clear to me why everyone billed me separately: there was the hospital internists, the EMT bill, the hospital bill, the neurosurgeon's bill, the co-neurosurgeon's bill, etc. Why were they all separate when I'd been in one place the whole time? This made me want to start a new restaurant where I would call it Split Check. Only doctors would be allowed to eat there and they would get one bill from the waiter, one bill from cook, one from the manager, one from the janitor and each one would have very specific but obscure descriptions of why they had earned this money.

In my continued efforts to always be an optimists, my friends and I looked through the bills if for nothing else for amusement. There was that "Rad Arrow Art Set" $128, the "Adult Sensor" for $168, the "Airway Oral" for $13 (a real bargain for oral one of my friend scommented), the Urine Meter with the 16 foot fold for $126 and the finger probe for $180. These were just a few of the vague but amusing descriptions that made me realize I'd had a much better time at the hospital than I remembered. But they didn't even let me bring home any of my rad art pieces.

I'm sure it's standard practice in the hospital billing profession to do this but each of these bills was a fair chunk of change, the smallest being $1000 and the largest being over $70,000. Each of them came with some form of a caveat: This is not a bill. We have sent this to your insurance. You will be reponsible for any parts that they do not pay." Now in grand total the first round of bills was over $100,000. Of course, once insurance would kick in and my maximum out of pocket was paid out this was going to be dramatically reduced. But, I learned some things quickly. 1) Just because you're young and healthy doesn't mean that you should skip signing up for short or long term disability (after a major disease you don't have the option). 2) Just because you've never called in sick doesn't mean you should take the least amount of coverage possible. 3) Maximum out-of-pocket is a myth. The number of things that don't apply to out of pocket is almost enough to make the concept absurd. 4) If you're going to have major medical problems, make them near the beginning not the end of your insurance fiscal year (mine was the calendar year so starting to have issues November 5th was very poor planning on my part). Anyway, the way the bills come in if you didn't already have health problems could well cause a heart attack.

My grandpa always used to say if it's about money, don't worry we don't have any. I started relating to the fast. I had saved up almost $10,000 over time for an emergency rainy day. That started feeling...inadequate. I had always managed the finances for our family;  my wife knew there was always consistent finances and that we were relatively sound. For the first time in my adult life, I started panicking financially. A couple of friends pointed out that it was silly that I was more worried about the bills than I was about some of the health stuff but I'd grown up poor and didn't want my daughter to ever experience that. There was a point where looking at the bills I seriously considered finding a way to pay all those and finding another job or two and never following up. I finally realized that that may well be stupid both in the short and long run so I went back to my split check and tried to come up with a smarter plan but this was a restaurant where I definitely wasn't leaving a tip.

Tuesday, January 18, 2011

Questioning Anger

I had shared all of this fairly publicly because… well because that’s my approach to life. Susan had noted this early that it was wild the way I just put that out there. Initially I was just talking to people with not much more casualness than I went to this concert last night. It wasn’t because I didn’t realize it was heavy, I just wasn’t aware how heavy people took it.

There were two reactions that were very common: “Don’t you ask yourself why me?” and “I would be so angry.” Those were different but they rhymed. There has never been one time since where I asked myself “Why me?” I obviously questioned myself if I had done anything to cause this but current research showed that there were no known components (ie dietary, environmental, genetic, lifestyle etc) that caused this. So I couldn’t have chosen a different location, restaurant or better parents to avoid this, at least as far as we knew. During the course of research, I would eventually talk to an alternative healer who swore she had cured herself of brain cancer (she wouldn’t give me many details) and that the most important thing I needed to figure out was what ‘great stress’ in my life had caused this tumor to grow in me. She added that hers had been caused by the great stress of her divorce and her healing began because of that awareness and her starting acupuncture, certain herbs etc. Now I am a full believer in that stress can create physical problems but I am not of the idea that everything happens for a reason. That doesn’t mean nothing happens for a reason just not that everything does. Anyway, the short version was that other than looking for things that I could control/effect, I never questioned why this had happened to me. Besides, the short version is there wasn’t anyone I knew who I’d rather have gotten this than me. That doesn’t mean that I was grateful I got it but I certainly wouldn’t trade spots with someone else just so that I could avoid it.

The simple truth was that it would have been hypocritical. It’s an odd human trait to me that when life is good, we rarely question it, in fact we often barely notice it but when things are bad we so badly want an explanation. I knew I had a good life (how good was a revelation that was still coming) with a great family, good friends. I had hobbies that I loved and despite growing up in a family where the value of education was not as strong as it could have been due to still being in transition, I had graduated high school at the top of my class and college suma cum laude. Never once, not even a single time during that period, did I question how I’d been so blessed, had such good fortune. So now, something had gone bad. Life has ebbs and flows and I’d been privileged to have some really high rises and well maybe that came with one of these falls. Some people have far worse problems with far less of those privileges.

The anger thing fell on the same lines. Some told me if they were me they would be so angry; others told me that they were so angry that I had it. Personally speaking, I wasn’t mad at anyone; who was there to be mad at? My good Christian friends consistently told me that I shouldn’t worry because God was in control. Again, I don’t doubt that Anyone who runs the universe could cure cancer but the truth is that I’ve never asked. I sometimes pushed the envelope with some of my more adamant friends who were beyond certain that God had to cure me because of His power and dominion. I asked them if God had given me the cancer since he was in control, not one of them could acknowledge that. It wasn’t his fault so I wasn’t angry at him, the universe, or my cell phone company. Proverbs says that the race isn’t always to the swift nor the battle to the strong sometimes chance and luck just happens. Plus, at that point it wasn’t clear which was stronger me or the cancer so I wasn’t sure who I wanted the battle to go anyway.

Monday, January 17, 2011

A Muse


Something very strange started happening shortly after that. It had been long enough to where news of this was getting around to friends, acquaintances and strangers (though a friend who didn’t hear for almost 3 months would later say that this would be better as a very elaborate April fools joke. It isn’t but that’d be impressive). Part of that progression of news was human nature, our need to share, gossip or what have you. Part of that was my public approach to life having shared so much of my cancer details on facebook. As more people found out, all of a sudden, this was taking over odd things.

There were things I’ve always said: when people ask how I am, I say “I’m always good.” If that response is questioned/challenged I responded with, “Well, things are never so bad they can’t be worse” (A Lilly Tomlin quote). I went back to work and continued to use this routine response. Another phrase I have always used is “No one ever says on their deathbed…” For example, when people complain that they are too tired to go out that they are just going to home and watch TV or go to sleep I’d respond with “No one ever says on their death bed, I wish I’d watched more TV.” “No one ever says on their death bed I wish I’d slept more.” “No one ever says on their death bed I wish I’d eaten less chocolate”…etc. Anyway, you get the picture. I kept using this phrase as I always had. Part of it was that it just felt like a clever line and part of it was the fact I often really did make very small life decisions based on that. I know that’s weird but when making these small decisions I’d be like if I was dying tomorrow which one would I rather do. Yes I did this long before I knew about any of these events.

Well, the short version is I kept using these phrases. I once asked my mother if I had ever been shy and she laughed for several minutes. That’s the long way of saying that I have always been a ham and joked around and made fun of life and whatever was going on at the time. I continued to make jokes about life in general but because my life now had cancer confirmed in it, I made jokes about that. People asked about what my wife thought about it and I said “Oh she’s already working on her match.com profile.” A few days after returning to work to my coworkers as we went to another birthday lunch: “I’ll try to make this birthday less eventful than the last one.”

All of a sudden what had always been amusing turned to a new level: ‘You are so positive.’ ‘I love your attitude about life.’ ‘You’re an inspiration’ It was a little over the top because it’s not like I had changed anything. Some of the people who were impressed with me had always been impressed with me. My favorite were the ones who had been my friends and had not been impressed with me still weren’t. The annoying ones were the ones who thought that it was trite of me to say things like “I’m always good” and now thought it was such a marvelous thing. There came a point where I got so annoyed with one of the supervisors at work who usually was less than gracious was being extra polite and ultra sensitive and I said “Hey, I’m the same guy I always was, I’ve just got brain cancer now.” That made for an uncomfortable moment but from then on life was closer to normal with her.

People were apparently and suddenly very impressed with parts of my life that were unnoticed or unimpressive before: these phrases, me running, me playing sports. It was very peculiar. The phrase I got the most often since then was “You’re inspirational” or “You inspire me.” Since I was just trying to get back to my life I didn’t know how to make sense of that so I finally just came up with the one liner “Please do not get inspired to get brain cancer.”

Worker's Comp

Getting back to work was something I had put effort into making things happen fast. Besides the obvious factor of guarding off time hours in light of recent events, I really enjoy my job. The receptionists had never heard from me “Oh another Monday” or “TGIF” because my job was an integral part of my life not something that I did just for a paycheck. I believed in what I did and was excited about getting back to it.

So I turned in my clearance sheet to human resources and said I’m going to work. The human resources staff said:
“Whoa, you can’t do that. I have to get this cleared before you can return to work.”
“Well my doctor has cleared me and I feel so what I would do in the meantime?”
“You can keep using your sick time.”
“Maybe you haven’t heard but I have brain cancer so I’m valuing that pretty highly.”
“Um…well you can use vacation time.”
“I’m going to go to my office and get some work done”
“I didn’t say that you could so if you slip or something goes wrong, I didn’t clear you.”
“Nope, I didn’t say you did, me and my doctor are okay with it though. See you later.”

There’s an old joke about human resources being neither and it definitely felt true that day. I know liability is something has to be worried about everywhere but it would have been nice to have been welcomed with some humanity. This was a place where never once had I ever called in sick (which fortunately had given me over 300 hours of sick time saved up). In fact, I’d never called in sick to any job. I can only remember missing school during my academic career for one week of chicken pox. I was just trying to get back to work and it’s not like I was contagious. I went to my office and started catching up. Twenty minutes later I got what felt like a criminal trespass warning:

“You need to leave the campus and come back when we give you permission”
“What do I do about the time away?”
“Use whichever personal leave time you prefer.”
“I’m not going to do that.”
“You need to leave the campus and come back when we give you permission”
“Okay just put that in writing and I will.”

I never did get it in writing. Rather, a while later, I was called into my director’s office where I was told that the department was going to be reviewing what was going on and that I could sit in my office and do paperwork but I could not have contact with the kids or their families. Apparently, I was more contagious than I or anyone in the medical profession had realized. The director was clearly just doing what someone above him had told him. He had actually been incredibly kind and even visited me in the hospital. He expressed that he would like to keep me at the job but that the driving restriction might create complications. I told my work I understood but that I would do all that was expected of me (driving was minimal in our position) but that in the meantime while they were figuring it out I would work at a couple of places where I had previously worked that never required driving and/or if necessary clean the bathrooms but that I had too much energy to not be back at work.

Oddly enough, while on this isolation mode, my immediate boss kept assigning me new cases that I couldn’t talk to (the cases were in my name but I had to ask someone else to talk to them). I went to work everyday, making sure to be punctual and mostly trying to stay in my office. Being who I am and not good at being cooped up, I wasn’t perfect but I was decent. People kept coming by the office to say hi and I’d catch them up on the health stuff and then make some joke about being in quarantine because apparently brain cancer was more contagious than any of us realized. At that point, I still thought that this was a paperwork mix-up or a bureaucracy problem and thought it would be a few days and we’d clear this up. The human resources contact made me nervous but I wanted to believe that a place I’d given 5 years to and all I was asking for was to be allowed to return to was not going to turn out to be an unreasonable request.

Rocket Science



Three weeks after the biopsy, I went to see the neurosurgeon assuming that the biopsy would not be in. The office had told me the previous Monday that John Hopkins had up to 10 more business days and the previous week had only had 3 since I had set the appointment. I went to the doctor only to get clearance to return to a job that I was missing, working with juvenile delinquents. I loved my work and wasn’t good at sitting around so it was time to get back.

I walked into the office and it was a solid two hours of waiting. This didn’t create any anxiety but in reality it was mostly a nuisance. People since then and after that have constantly asked how I was sleeping. The short version was that I was sleeping fine. In fact, I was annoyed at how much I was sleeping. The dilantin still had me sleeping far more than I liked and eating less and so had lost some weight due to that. My wife had also lost weight but hers wasn’t due to medication; frankly she didn’t have a lot to give. At some level, it makes lots of sense that she would have more worries than me. If anything happened to me, the burden would fall on her. However, not having more details from the biopsy result, I had let many worried be on standby for the time being.

Mostly, I was just ready to go back to work and had no other expectations for that appointment other than to be cleared. I would tell the doctor I’d gotten back to running, that I’d won an ultimate tournament and had immediately retired and that I had two more soccer games until I retired from that. However, when we finally did get in, the doctor said the biopsy had arrived and that he needed to look at it. This mild mannered neurosurgeon said with all the casualness in the world “Well, it came back as grade II…which… is worse than grade I… but not as bad as grade III.” Never in my life have I more badly wanted to say, “Well that’s not rocket science.” He also had added that it was an astrocytoma, a tumor that was star shaped but that in my research I would find out was really more like an octopus. The number of arms it had was not set but these ‘tentacles’ also weren’t in a clear pattern like a star fish. They thought it was going to be that type or another type (that I now don’t even remember the name of) which was self contained, no arms. So, out of the 4 possible scenarios, it had come back as the worst but the doctor still wanted to proceed cautiously. Had it been grade 1, the path would have been fairly clear, monitor it and do something if it grows. Had it been grade 3, the path would have also been fairly clear, do surgery because otherwise time was likely very limited. This grade 2 created some problems because the path was unclear on which one of those two roads was the better one. This doctor wanted to be cautious so he wanted to get some extra tests done, a full neuropsychological test, an angiogram, a follow-up MRI, and WADA testing. He also wanted me to have a follow up with my neurologist and meet an oncologist. I visualized a calendar that went from being filled with parties, ultimate tournaments etc to one filled with medical appointments. Mentally sighing, I resigned myself to that before we even made a decision, this was going to take some time. This hitchhiker was going to be along for a long ride with many time, money and emotional toll booths. I turned to my friend Will and said “Don’t get brain cancer, it’s a hassle.” He responded that he would keep that in mind.

Dr. Kim cleared me to go to work with only one restriction due to Texas State Law, no driving until 6 months time had passed. Due to having learned from a coworker’s problem with previously trying to come back from a medical procedure, I had called HR and read them the form and they said that would be enough. I knew this was probably coming and I had let my work know this restriction was probably coming. I went to work and turned in the form assuming/hoping that I would get back to my job. That assumption began what would turn into the worst part of the beginnings of this ride.

Sunday, January 16, 2011

Denied

Thanksgiving came a couple of days later. A realization had started to sink in that I had been less than adequate at connecting with my extended family. My mother is the oldest of 12 children and I have so many cousins. I invited them all for Thanksgiving and they all said they would think about it but in the end none of them came. It occurred to me that I had failed quite poorly in establishing that link. I couldn’t quite figure out what was the issue. I’d been the photographer at a couple of their weddings. I’d been to almost every one of their houses for important reasons and for unimportant ones but almost none of them had been to mine despite this being the second Thanksgiving I’d invited them all. In those three weeks, lots of local and out of town friends had come in but besides my immediate family, I had only seen one aunt and uncle, Ceci and Luis. I was very embarrassed that I hadn’t made this bond more broadly.
This was reflected when I realized I had several different invitations from friends and 1 from family. I had moved away from where everyone lived and it just reminded me that the relationships we’re good at don’t come down to trite phrases like “blood is thicker than water” but like muscles; the ones you work on are the ones you build and the ones that you are more likely to injure, the ones you don’t work on may not get injured but they will atrophy.
I started the day less than 3 weeks after the biopsy by running in the Turkey Trot. While initially in the hospital I thought there was no way I’d get to it but by then, I was committed to going out there. I went out there relatively slow…for all of a quarter mile and then I turned it on. I ended up finishing in the top 100 hundred out of over 17,000 runners or 4000 timed whichever way you want to see it at a 6:15 pace for a 5 mile course. Those muscles weren’t atrophied and I wasn’t intending to let them become so. With that in mind, shortly after the race I emailed, called, and/or texted various family members to start working on some those atrophied muscles. Family is ultimately what you make of it and I wanted to keep growing my family. I had done it through great friends and I needed to work on growing it more organically and biologically.
In the end, we went over to the neighbors Rick and Laurie’s for the meal and had a great time. One of my favorite things about this holiday is the fact that people get to share what they are grateful for. When it was my turn to say, I said something that I was grateful for: that 2010 was the best year of my life. People still think I’m in denial because I say things like that but I simply contend that it is unusual that good and bad cancel each other out. In 2010, My wife and I had connected better than we ever had, Kiana and I had as well, we’d traveled a lot, my wife had gotten a new job and until this thing there simply hadn’t been any serious problems. If denial meant I thought I didn’t have cancer, well that was basically untrue. If denial meant that I refused to make it the center of my life and wallow in self pity or drown in worrying, then I was going to embrace denial with both arms.

Friday, January 14, 2011

Goodness Gracious


The day Nicole left was the first time since all of this had occurred that I had to spend a fair chunk of the day by myself and I was quickly restless. As the old phrase goes, you can’t keep a good man down and it was going to be hard to keep me down too (actually, the comment my wife made that I really liked was that only the good die young so there was no way that this tumor was killing me).

Anyway, it took no more than a couple of hours of sitting around before that got old. I called every doctor I had seen in the hospital trying to get an appointment because my job required me to be cleared to be able to return to work. The frustrations were chin deep quickly. The doctor who had seen me was not a hospital doctor and I had been out for more than just a week so he couldn’t see me. The neurosurgeon didn’t have an appointment until January, the neurologist till mid-December plus the biopsy results weren’t in yet. At the hospital I got transferred multiple times to where no one was willing to help. I told them all I’m not wanting results, I just want clearance to return to work. I could handle sitting in my office since I’d ran 13 and 14 mile runs since being release. In the midst of the frustration, I recalled that an attorney friend had said, I do this kind of law and feel free to drop my name. After almost two hours of being on the phone with no progress, I remembered this and asked someone to call me back with when I could talk to a doctor within 15 minutes or they’d get a call from my lawyer in twenty. Five minutes later somehow there had been an opening in one of my doctor’s schedules for the following Monday. One of the nurses was very kind and said ‘Sorry that it’s been a hassle but honestly, I’m not sure anyone has ever tried so hard to get back to work so quickly after a brain biopsy.’

Luckily, that same day, there was a balance to that level of difficulty. My wife had previously worked at the daycare my daughter went to. It was her compromise between staying at home and being a stay at home. Among the several children she had taken care of there one of them was Andy Stewart’s. He was a guy who had been in the business of selling brain surgery equipment for a couple of decades. It was interesting the way our families had overlapped. My wife had taken care of his daughter and thanks to his wife I’d joined the Ship of Fools, the running group that was constantly becoming a bigger highlight of my life. He called me and said he wanted to sit and talk with me about the equipment and the Livestrong Foundation. Still not cleared to drive, I asked if he would come to the house and then take me to the running group after. I figured he’d come about half an hour before but he proposed a full two hours before!

Andy came over and he spent more time explaining things than anyone else had at that point or since then. The doctors at the hospital had said that they would be putting in a needle the size of an angel hair pasta in my brain, he showed me the actual type of needle they used. He showed me new technologies and approaches, talked about various facilities. He talked to me about the Livestrong foundation and said that he was good friends with Doug Ulman, the CEO and that they would take excellent care of me. I spoke with them within a few minutes of him being there and the foundation stated that they would send out some info and could possibly recommend doctors. Nicole’s remark about my casual attitude had started to shift and I was ready to start digesting more information, trying to figure out how to be proactive about what the best path to this thing was. He drove me to my running group and despite the fact that I had a race two days later, the Turkey Trot, I felt extra motivated and somehow found a way to come in first despite the fact that the fast guys were there.

The Livestrong Foundation had stated they would send some information out to me. I figured with the Thanksgiving holiday being two days away that I would get it the next week. It was Fed Ex-ed and waiting on my door step the next morning. The brochure had a whole lot of information about cancer in general and resources of every sort. The lady from Livestrong, Ashley Koenings, called to make sure I’d received it and offered even more resources, including one that I dismissed at the time, to talk to other cancer survivors. She was and is a lifeline, someone who quickly answers emails when I have a question. When she doesn’t know the answer, she says she’ll find out and always does. Best of all perhaps, she often sends random emails just to check how things are going. If the healthcare had half their customer care, there'd be a lot less complaining.. They were a non-profit and amazing. Mark Twain once said that ‘it is very wearing to be good.’ I don’t know if that’s true but Ashley and Andy were much better for the wear.

Wednesday, January 12, 2011

A Casual Relationship


Nicole, besides helping provide a great week, gave me an insight that no one else had noticed. From the first moment I found out about this growth, I’d been making jokes. Literally the moment the doctor showed it to me on the MRI in the hospital, he said and here is where the tumor is. Without missing a beat, I looked at him and said ‘Well, rub some dirt in it.’ This clearly very intelligent Asian man looked at me (this was the first conversation we’d ever had), didn’t know how to react and said and if you look here and continued. It wasn’t until he checked me out, despite lots of cracks, that he actually smiled at me and congratulated me on being the first patient to ever run.

Long before this my approach to life has to make fun of it and loved it when others did. They had told me that where the tumor was that the biggest possible risks were losing language, coordination and/or short memory entirely or at some level. When my wife heard, there was some possibility that I could lose all ability to talk she asked why we didn’t sign up for the surgery immediately. There were also some minor risks to some functions like sexuality (members of both genders should be excited!) and facial recognition (with some faces that would be a serious blessing). As I explained these things to people I’d make those type of jokes or ones similar, always breaking the ice and awkwardness as I gave people some information. The cracks never seemed to stop in either direction with friends commenting that this proved that muscles atrophied if you didn’t use them. Another friend, visiting from out of town, saw my biopsy scar and said that I looked good except for that one side of my face…the front.

Always smiling, always making jokes I’d explain what I understood at the time trying to have humor in the middle and as the punctuation point at the end of the conversation. Friends and acquaintances all kept commenting that I was handling this with ‘aplomb’, with a ‘great attitude,’ that I was so ‘positive.’ In more earnest remarks, I would comment and say things like “Look, if I’m dead in 10 days or 4 decades I’m okay either way” or “I’ve done more in the last 10 years than most people do in a lifetime” a remark that I let arrogantly grow into “For crying out loud, I’ve done more in the last 2 years than most people do in a lifetime.” Nicole had spent most waking moments with me for the better part of a week and she made a very astute observation: ‘Everyone says that you’re so positive but you’re not. I haven’t heard you once say this is something you’re going to beat or even give a fight to. Your comments about this aren’t positive, they are casual and everyone simply takes the fact that you’re not scared as positive.’

She was absolutely right but it was a thought hadn’t occurred to me. Unlike most times in my life, I had simply just said the past has been good without looking towards the future. Unlike typical, I had not taken to researching possibilities, statistic methods. I had simply sat to wait for the biopsy and make cracks along the way. I didn’t have work because I had not been cleared, I was going to have to give up sports that I loved but it wasn’t even registering because I was waiting for my biopsy. It was an eye opening moment and that’s when my mind slowly started to shift from this being just a happenstance to something that I needed to be more actively involved with. My relationship with cancer went from being casual to being…complicated.

Good Times, Come On




A few days after that Nicole, a friend, who was coincidentally visiting from California, arrived. She had been friends with me since college and had always wanted to visit Austin. It turned out to be a well time visit because, it saved her a rental car, it gave me some activities, it created a diversion for a few days while the biopsy results were still out. She was kind enough to drive me around to see a few friends and joined us for some meals.

She had always wanted to go rock climbing and my friend Dave Street took us. I was able to climb things I had never done before. The last climb we took was rather hard, and while Dave probably helped more than I care to admit, I finished the hardest climb of my life despite the fact that my leg was literally shaking. I went to the ship of fools’ workout on both Tuesday and Thursday that week and finished first in both of them. Brandon, a guy who is definitely faster than me, and who did not know about recent events said that I was running with a different gear than he’d ever seen. These workouts were taking every ounce of my energy. Another side effect of the medication was no hunger and extra sleep. I was sleeping in the order of 10-12 hours a day almost double of what I used to do. The guy who had always been hungry was now eating because he reminded himself so. I never figured out what was the chicken and the egg in creating energy problems there but while mentally I was acute my body was certainly not responding. I was also sore in places I’d never been before in my leg, I think due to the fact that I was leaning oddly.

Luckily, about a week and a half after I got out of the hospital, there was what may be the last Ultimate tournament I would play in. My friends Chad, Dre and I had talked a crowd from New York to come to play to this tournament in Austin (while in all frankness, there were people from Cali, South Texas and local ones as well). Like the lions share of tourneys in town, I was the tournament director and while a few people offered to take the role, I kindly passed up their offer. I had brain cancer and while it was illegal for me to drive, I was not disabled.

The tournament ended up being a great thing in every aspect. The weather was great, it was the most teams from the farther regions it had ever during my 4 year tenure as director. A few people had to help out with some tasks I couldn’t physically/legally do. My wife did more than anyone else and said ‘You do all this stuff every time. Wow, you’re an idiot.’ There were a lot of great things that I’d worked on before this that came to fruition over that weekend. The tournament ran smoothly, the party was a success and some of the new ideas we’d tried out were successful (ie mariachi during game play and a taco truck). Physically I looked relatively okay but was still a little off. The very first throw where I first had to sprint since this happened my vertigo came back and I fell after catching the disc. Everyone assumed that it was a slip but it was simply lack of balance. I tried hard to play all weekend but the reality is I played less in all weekend than I typically did in a game or two.

However, it was still great. It was a weekend where the news still hadn’t spread too far and that for the most part I was still just the tournament director who was handing out tequila bottles, who was dancing at the party, who was handing out the tournament prizes. The biopsy was up in the air so with so little information the people who knew and I exchanged lots of brain jokes. The people who didn’t know there was still some level of normalcy so I danced at the party and played in the tourney.

Surprisingly, we beat a team fairly handily in the quarter finals and the semi finals. The finals were close but in the end, the team had a turnover near the endzone we were attacking. I picked up the disc and threw it in for the winning score. I don’t know if I’ll get to return to Ultimate but if I don’t…I went out on top. With the humility I’ve always had, I picked up the trophy, a gigantic pi├▒ata filled with candy and little tequila bottles and very ceremoniously presented it to myself (and my team). The team then tore it up and let my daughter be the one using a stick to beat it with conviction. The pinata was skull shaped and I wished she could beat my tumor with such conviction.

Monday, January 10, 2011

A Running Start


While initially in the hospital I thought that maybe my hardcore exercise days were over (a couple of doctors having suggested I become a casual biker/walker), by the time I got out I wanted to get back to marathon training as soon as possible, to run from my problems if you will. My ‘liberal’ doctor had said I could run as long as I took it easy and ran with someone ‘just in case.’

I got out of the hospital and tried to run the next day. I was on three medications at that time, a steroid for healing purposes, two anti seizure medications plus I’d been given some pain killers but I wasn’t taking those. The biggest side effect at that point was my sense of balance. Initially I could only be up for so long before I started to have some vertigo but that subsided quickly and I could walk without any issues. However, during that day after the hospital run, I couldn’t even go 40 yards without feeling like I was going to fall over. I tried several times to start…but just couldn’t do it. Eventually I turned around and walked home feeling rather thwarted. My neighbor Rick who I often crash into and have long conversations with saw me but at that time didn’t address me. I didn’t see him at all, probably since my head was pointing straight down, but he would later say to me that I looked like a beat dog walking with my tail in between my legs.

The next day I very consciously was standing up as much of the day as possible, trying to ‘regain balance.’ I tried that run again and while there were definitely times where it felt like I was leaning over I completed 3 miles. Saturday morning, a friend took me to run with the group I’d been training with, the Ship of Fools. My training program called for a 13 mile run that day and 5 days after a brain biopsy and two after getting out of the hospital, I didn’t see a reason why I shouldn’t be able to do it. So I started and continued and…continued……continued…with each mile getting harder and harder. It was the hardest run I’d ever done except for the 2 marathons I’d done. Nothing felt injured, it just felt like I hit a brick wall at mile nine and I was simply powering through. At the end of the run, I was once again just very discouraged. Jeff, a guy the group calls ‘Big,’ offered me a ride home and I updated him on the situation. The biggest part of Jeff has always been his personality and with an upbeatness that is contagious, he listened to my fears that I wasn’t going to be able to run this marathon and how I wasn’t sure if I’d be able to make the workouts. Without any hesitation, he said to email the group and that the shipmates would get me there. Besides, he added, clearly it means something to you if you were trying to do it from your hospital and it’s cheaper and better than therapy. If you’re slower, you’re slower, he consoled, but I don’t think you will be.

The day after that run I had an urban race where I was partnered up with the friend who’d run with me in the hospital, Matt. This was the 4th one I had ever done and that’s the place we would finish in: 4th. It was the first time I hadn’t placed in one of those having come in first or second in the others. Matt was always a step ahead of me and I just couldn’t keep up with him. We’re relatively the same speed usually but he was clearly having to slow down for me, something that if it frustrated him he didn’t show, but it was sure frustrating me.

Those first 4 attempts at running were incredibly gloomy and my wife said, ‘It’s okay sweetheart. You don’t have to get back into everything immediately.’ I looked up and said something off the cuff that would become a very relevant truth: “I’ve never been average at much of anything. The day I stop trying to be superman is the day I’ve given up.” She wisely responded with “I trust tomorrow’s run will be better.”

Friday, January 7, 2011

Herbs, Vitamins and Prayer

Over the next few days and weeks, I would come to learn that apparently there were a couple dozen cures to cancer. How modern medicine had missed so many of them… I just couldn’t tell. As people heard about my medical situation, I got lots of advice. The lady who cut my hair, literally poked at the scar and said, ‘what’s that?’ After giving her a couple of outs in regards as to what had occurred, I explained it to her. Her reaction was “Oh… I don’t trust doctors…if it was me… I’d try herbs, or vitamins, or prayer. Maybe even all 3.” A waiter at a restaurant I went to very excitedly told me what it would take to cure me. “Read this book and follow it’s advice” as he wrote down the book’s name on a napkin.

This was not unusual and I quickly recognized that like the gift cards, it was a way of saying I care and meaning to be helpful. I had a friend from Mexico who knew a healing lady who could get me some pills but didn’t know what they were called or what was in them but guaranteed they could heal me. Friends recommended lots of books, (the one that has’t been written amd I'm tempted to write is ‘Brain Tumors for Dummies’), brought me articles from magazines like Wired and academic journals demonstrating the latest research. I had two friends who thought that certain types of massages were going to cure me. Phyllis, who is an alternative healer for a living, gave me a very precise plan of what she was going to do and told me that I would be cured in 10 months. People told me they were praying for me, several prayed with me. Other friends connected me with some medical organizations that used lasers, vaccines, more pinpointed radiation. There were several diet suggestions of Oni Juice, having broccoli for breakfast everyday, diets that affected angiogenesis, taking this spice from India, drinking that juice, that smoothie addittive. People brought me into their moon circles, had put me in a prayer sheet that was burned for purgative purposes. They were sending me positive vibes, a couple even put food sacrifices in front of statues (Catholic and Hindu) for me. I was invited to go see a healer in China, another in Phoenix, a 3rd in Brazil.

I was and am always a skeptic of taking life too lightly or too seriously. I try to hold onto that axiom of the apostle Paul: prove all things, hold fast that which is good. I, in fact, researched each and every suggestion and contacted some of the providers of the variety of products. Research into some of the others suggested they were little more than psychosomatic. Others I disregarded due to the fact my financial issues were going to be complicated enough without taking trips to see international healers with no research data. Others I disregarded because they might be worth than death (ie eating broccoli for breakfast everyday). There were a few I incorporated almost immediately after some research but to my credit/discredit there were absolutely none that I instantly dismissed. Most Ideas, like most people, generally have something that has attractive features. It may not be in the end something substantial but it may be worth looking into. I didn’t take them all in, and while I've had some conversations with a doctor yesterday, today, the day that I’m writing this, I have had herbs…and vitamins…and prayer.

Wait and Si


It would be almost two weeks before the biopsy came in. I kept joking that “I’d say the suspense is killing me but if something is killing me, it probably isn’t the suspense.” In the meantime, I went home. As had been true in the hospital, the friends kept coming, the visitors kept being present. This was incredibly encouraging to realize that I had this much support.

There was only one ‘negative’ aspect about it. I had always wanted to be in their company and thoroughly enjoyed it; otherwise I wouldn’t have them as friends. The problem was that no one appeared to be able to say no. There were some things I didn’t have options on, the seizure restricted me from driving so I had to get rides so I had to ask for rides. There were other things like everyone reaching for the bill, getting discounts from restaurants I frequented who had heard, people willing to help in ways that if I didn’t have brain cancer would not have done it. The simple truth is that it’s what I would have done for any and all of them but it was and is touch to accept for a guy who had always been as independent and self sufficient.

Susan, an old boss and one of those friends, came to have a meal with me. We had shared a meal shortly before my 30th birthday (less than 3 months before this all started; I’d been warned things went down hill at that age but I didn’t expect them to go so fast) and she asked me if there’s anything I regretted having done. I said not really other than the things that we all regret, having hurt people, having been petty during unimportant things. The conversation was focused mostly on things I’d wished I’d done and the short version was that there really wasn’t anything I’d ever thought about doing that I hadn’t except one thing I’d waivered on…a tattoo. For the last two years before I had thought about getting a tattoo of a lion, a lioness and a lion cub. I’d gone back and forth. Susan once again asked the question about if there was anything I wish I’d done differently before finding about this and with no memory of the previous conversation, I brought up the tattoo and she remembered it. She said we should go get it right there and then, that she would buy. I had a hard enough time with the fact that she was reaching for the check, there was no way I was doing that. But over time she has kept insisting and she’s slowly talking me into it.

During this time, blog articles, articles and a song were written about me. It was nice to have people show that I meant something in their lives. They were all kind but my most favorites were the ones that were more realistic portrayals: one of them called me snarky, one said that I was too pushy and not really in everyone’s taste.

Eventually my friends would announce a tournament that was going to go to my medical bills. They never asked me about it because they knew me well enough to know there would be no traction on that request. I found about it when they announced it to the public. Someone somehow anonymously deposited $400 into my bank account. A few friends provided gift cards to restaurants and stores I liked. The intent was always appreciated and I was aware enough that it was people trying to help and not knowing how they could help. Ironically, proudly, however you want to phrase it, these were the things frustrating me. My wife’s coworkers had put together a pool which got us an HEB gift card for groceries, and two restaurant gift cards. She came home, handed them and a card to me. Immediately, I threw the entire thing across the room and broke down crying. I’d been there for so many people but it wasn't in hope that I would need it someday. I didn't know if I didn't want the help or just didn't want to need it.

Thursday, January 6, 2011

Most Unique


The biopsy procedure went well but getting the results ended up apparently being complicated. The doctors originally said it would be a day or two but then the neurosurgeon stated that something was unusual about it and that they were going to send it up to Austin’s more premier lab which was in Austin. The guy there apparently felt the need to pass it to a world class lab at John Hopkins where the guy there felt the need to pass it up to the lead guy. While it was flattering that some of the world’s best were giving me their attention, it wasn’t really encouraging.

The doctors, either in person or by this brochure, would explain that this is a very rare cancer. It occurs 7 out it 100,000 people and where I had it was 3 in a million. My friend Todd, a mathematic precisionist who always got stuck on the fact that people would use phrases like very random or rather unique (those being absolute terms) remarked that clearly I was the uniquest of his friends. The reality of this at first didn’t sink in as to what this translated to. I’d always been different than most people and most of the time it had panned out to my benefit. Having been the poor kid from Mexico who had now traveled all over the world, having grown up from a working family where education was not emphasized so much as work and taking the step to graduate at the top of my high school class and suma cum laude from college, having always been “different” having a rare cancer didn’t really register initially; it would just be one more way that I was different. The doctors explained that there were no known causes/connections to this either genetic or environmental. My brother Alonso joked that he’d always wanted a mind like mine but now he was not quite as sure.

Research would eventually show me that science was politely saying that we’re flying blind here. In one sense that was literal, if surgery were to get done, the tumor is visually no different than the rest of the brain and so what they would do be guided by a computer in a 10-14 hour procedure where they literally removed a small piece of the brain at a time and then did at immediate biopsy, registering it as cancer. Once the piece they removed was no longer cancer, they would stop. A doctor would explain to me that the brain had more ‘room to spare’ along the edges but more ‘critical centers’ near the center which is where my tumor was. If it was on the edge of the brain

The other thing they were saying politically correct is that we aren’t quite sure what we’re doing here. If you check the reputable websites, they all say something along the lines of “treatment for this is not agreed upon,” “how to treat this is controversial.” Like the rest of my life and personality, it will not be clean cut and dry.

Damned Blessings

So I sat in the hospital room ICU till Tuesday waiting for results and having a number of doctors giving me more info but always in short bursts. I would say that they came in for a few minutes but with some of them it seemed that they were not even in there for a full minute.

The Neurosurgeon didn’t come around to seeing me till Wednesday and apologized for not having seen me the day before but said that he was in a long surgery that had resulted in someone being paralyzed. From day one, I thoroughly appreciated this doctor’s bluntness and approach. Some doctors had suggested I give up running, ultimate, soccer (indefinitely), sex (for a month or so), alcohol and caffeine indefinitely (my response was “But what about rum and coke?”). The neurosurgeon was the most ‘liberal,’ having been the one who cleared me to run while in the hospital. He told me to give up the sports where a hit to the head was possible (soccer you have to hit it with your head and I’d had a concussion playing ultimate) but that I could keep running. I decided quickly that I would follow that advice in the long haul but I was also honest that I wouldn’t be giving them up immediately. I had one more tournament, Celebracion del Espiritu, 10 days away and I was going to be playing in it. I had a soccer league to finish and I would. If necessary, I would give up that stuff but I would do it on my own terms. He didn’t like it but I think we both appreciated the fact that we weren’t playing games with each other.

He and several doctors kept pointing out that I was the healthiest person they’d ever seen with . While I knew that they were pointing that out as a way of saying it improved my odds of recovery and decreased my chances of complications, it was not particularly reassuring. You’re the cutest ugly person, you’re the tallest midget, you’re the most blessed out of the damned; the remark somehow wasn’t comforting. At my job about a month later while people sat one day vehemently arguing about the benefits of eating healthy, I thought back to this and said “Yeah, I’ve always eaten healthy and I’ve never had any major health complications… oh dang it…” The person making the argument was rather annoyed with me. But the oddity of this was something to think about. I’d never called in sick in my entire life. Due to those realities, I had also signed up for the cheapest medical insurance, not signed up for disability, and my life insurance was well below adequate. I’d taken a gamble and it was somewhat overwhelming that it had paid off so poorly.

Kiana had come down with the flu the day after I came out of surgery so Kiana went to grammy’s house to not risk any infection for me. So it would be almost a week after I came out of surgery before I would see her. My wife had recently started a new job which she had not even started to accrue days off. Her boss was very understanding and told her she needed to take as much time off as possible but it would be unpaid (which was of course all she could offer). I told her not to take any time off as we’d likely do the money. The kid who grew up poor had been diagnosed with brain cancer and far more than my health I was worried about making sure that my family was taken care of financially. More than a few people would offer to help in that area but my worry and my pride could not be reconciled. I’d figure out a way to solve this without help. Strangely, I found it comforting when my financial advisor told me that I could drain my retirement accounts to pay for my medical bills, I had signed up for 3 races, the turkey trot, a half marathon and a marathon in the next few months and contacted all the race directors about getting a refund. Ironically, they all offered me one except for the marathon one, which was run by the Livestrong foundation. My wife, wisely, told me to slow down and several of my friends didn’t quite understand why the bills, not treatment, was my primary concern. The simple truth is that that would never stop being true because no matter what I do, I’m doing to die someday but I wanted to know that I had done right by my wife and daughter.

Tuesday, January 4, 2011

If I had Wings


So I generally eat healthy, not maniacally so but I would say better than average. Sitting in a hospital bed made me start eating things that were less than nourishing. People were bringing these great and greasy tacos, fresh baked cookies, fries and all things that people would generally consider comfort foods. Shortly before the biopsy, I had a craving something I had not had in years, Hooters Chicken Wings. My friend Todd said he would bring some that we could eat after the biopsy, his quiet reassurance that there was nothing to worry about, and…that was one of my first thoughts after waking up. And trust me I ate them all up.

Apparently, some things happened shortly after I woke up that I don’t really recall. My wife and daughter came in to see me and my 3 year old daughter was disappointed that all they could see was the scar and not actually my brain. We had shown her the MRI and explained to her that “daddy had a booboo in his left temporal lobe.” We had explained to her they were going to be taking a piece of daddy’s brain and she expected to come in and be able to see right into my skull. I laughed when I heard that story and knew that if all of this resulted in Kiana turning into a neurosurgeon, it’d totally be worth it.

A series of friends came to see me that night: my neighbor, some relatives, a coworker, some of the ultimate crowd. Interestingly enough, I would not remember any of them eventually until someone talked to me and then I would then remember the visits and conversations. The jokes continued immediately with my friends saying I shouldn’t even have to worry about recovery since it was an organ that I never used. That was one of the things that I was actually very proud of my life during that hospital stay. Not just the number of people who came to visit me, there were plenty and it was encouraging. But during the time both during the hospital and after, there was a great variety of people Christians, Jews, Muslims, Atheists, Republicans, Democrats. Some of them were passionate about their faiths and opinions, some ambivalent. I was glad that I had such a range of friends (this would end up creating some interesting stories which we’ll come back to). Several of them told me they were praying for me and more than a few actually prayed for me; others said they were sending positive vibes. The ones who worried me the most were the ones who said, “I don’t pray but I’m praying for you.” I responded with “Whoa! Don’t be asking strangers for big favors.”

These things started and have continued to be a touchstone, having supportive friends. Over the next few weeks, friends would come from out of town to just have a meal with me: Dallas, Houston. Some came from further out like California and Chicago and crashed at the house. I realized then that I wouldn’t wish this on anyone but that anyone who went through this should have this much support. Rather than be dragged down, it was a time I was soaring, because my friends, well they gave me wings.

A Piece of My Mind


The doctor and my friend Paul had both casually mentioned to me something along the lines of “As far as brain surgery goes, this is a minor one. There is no such thing as minor brain surgery. Don’t know if you want to have conversation with any of your family but sometimes people do.”

I spoke to my mother first and was very clear that I didn’t want to be on life support at all if there was a high likelihood of brain damage or any longer than 3 days. My mother, clearly uncomfortable with that, said she understood and that she agreed but that I didn’t need to keep talking since she was beyond certain I would be making that decision for her and not the other way around.

My wife then came in and I was a little more explicit with her. I told her I didn’t want to have a funeral, that this idea of mourning someone’s death or celebrating someone’s life shouldn’t apply to me. Once I was gone, everyone needed to move on as soon as possible. She blew me off and said she was going to charge admission to my funeral as she was convinced that more than a few people would pay to have confirmation (Since the operation, she has really stepped up this program. While she has not been successful, she says that tickets are much cheaper if bought beforehand. Early registration is a serious discount and there are group packages available so act now). I added that I didn’t want to be buried that I wanted to be cremated and flushed down the toilet. I’ve been saying that for years but somehow I’m not sure she’s going to listen but she said she’d make sure I was cremated and that my ashes were scattered somewhere appropriate rather than kept. This entire time she was weeping, not crying but tears were going down here cheeks as we talked and flirted. We remembered some of this trip or that joke. Finally, I mentioned to her the life support thing, that 3 days max was all that I wanted and as the tears streamed down her cheek, she responded and said, “really, 3 days? I can’t start dating tomorrow.” We both laughed and I was reassured of what I’d always known, I’d married my soulmate. A couple of I love you’s and hugs and then it was time for the procedure.

The procedure had been explained to me that they would take a piece of my skull out, about the size of two pencils than they would put in a needle the size of angel hair pasta and take out some cells. They would be tested and I’d have results in one days of whether it was an astrocytoma (an octopus shaped cancer) or just a standard glioma (more of a blob). The astrocytoma was worse because it had tentacles that modern medicine doesn’t have a way to see during any type of imaging. The doctor said he thought it was likely grade 1 but that it could be grade 2 (I had learned there are 4 grades of cancer, each one worse but it was more like the Richter scale than a linear one).

Then, it was time. The nurses and anesthesiologists came in and were gathered round. I had once gone under before and was told when I was being injected. This time I already had an IV and don’t remember getting a warning. The nurses asked me how I was doing and I said I was fine but that either way I was about to give them “a piece of my mind.”

Monday, January 3, 2011

A Long Weekend


Well, as is sometimes the case about significant things in my life, I was wrong. Talking to doctors it turned out was a bad idea. The ER doctor said “Lots of people have seizures as a one time incident and never have any issues again. We’re going to do a cat scan just to make sure.” The cat scan doctor said “Well, there’s something a little bit off so we’re going to do an MRI.” The doctor after the MRI (yes each time it was a different guy!) said “well there’s something wrong in the center of your brain, it could be scar tissue, a tumor benign or cancerous and we’re going to admit you.” During the first doctor, my coworkers had been there. During the second one, my wife had shown up and left during the MRI to go get my daughter. After the MRI, when the doctor told me they were going to be admitting me was one of the few times I was alone in the hospital. The rational reaction would have been to wait for them to admit me or to wait for my wife but I wasn’t exactly rational. Rather, I covered up my IV with the long sleeve shirt I had on and put on my jacket and walked out of the ER. Not quite sure where the destination was, being admitted to the hospital was not a possibility I accepted real well. Coincidentally as I walked out, the EMT who had brought me to the hospital was bringing in someone. He coincidentally commented to me “Oh, you getting out of here, good. You look way better than the last time I saw you.”

As I walked towards the parking lot, I noticed my wife and my friend Troy walking into the main entrance. I got their attention and she asked what I was doing and was neither surprised nor pleased with the answer. She walked me back to my hospital room and then they admitted me. More than a few friends had noticed my facebook status and started calling, emailing etc. I posted what room I was in and by that evening over a dozen friends had visited.

The jokes started quickly:
“Well, the half of us who thought there was something wrong with your brain were wrong”
“We always knew there was something wrong with your mind, now we have proof”
“The things that you’ll do for attention”

I was admitted shortly before dinner time and a neurologist and a neurosurgeon didn’t come in to see me until after 10 PM. The neurosurgeone came after a 14 hour surgery at 11:30 PM. Luckily, there were friends still there so it actually was a lot of sitting and talking etc. I asked the neurosurgeon what was worst/best case scenario. Best case scenario was that it was some type of scar tissue and worst case was that it was a grade 4 malignant tumor which means I’d likely be dead within 18 months. He pointed out that he didn’t think it was either of those but rather an astrocytoma or a glioma, probably grade 1 or 2. This being Friday at 11:30 PM, he said he’d do a biopsy on Monday or Tuesday. Asking if I could be released till then, he said that he could release me but he’d rather monitor me and that it would likely be more expensive if I had two separate hospital admissions.

It was a very strange scenario for me. I couldn’t remember a time before that where I had sat for that long. My resting heart rate, in the 40’s, had gotten the doctors to put me on a heart monitor since apparently a weak heart and a strong heart beat at similar rates, just different efficiencies. I kept ripping it off (it itched!) and the doctors finally got a doctor to get me cleared from it so they didn’t have to keep coming in every time I took it off. I kept asking every doctor if I could go running. Unlike everyone else in the hospital, I wasn’t in pain and I literally had no memory of why I was there so I needed to get back to marathon training. My doctor finally agreed to let me run around the block as long as I had a friend run with me. My friend Matt came and the nurses walked us out and watched us do the first lap. They were casually informed that we’d be taking a while as I’d be doing a lot of walking since I was so tired. After they were in, we may have ran 8 miles. (Of course if anyone from my insurance or medical staff is reading this, I’m clearly exaggerating for good story telling).

The weekend (and Monday) was very long due to sitting around but was also very short because was spent with friends constantly visiting. We even had a poker game till 2 AM Saturday night. People brought movies, magazines (a couple pornographic, never figured out who that was), video game consoles but most importantly almost everyone stayed there for a while and talked.

Several doctors came to talk to me and they all kept saying we needed to defer to the biopsy. But they thought maybe radiation, maybe steroids, maybe surgery, maybe nothing maybe chemotherapy. They put me on a couple of ant seizure medications which put me off balance. Walking was difficult for the first little while each time.

The big question marks would be settled about 24 hours after the biopsy so they just wanted me to wait. So I just kept waiting for November 8th to see what was wrong inside my head.