Tuesday, July 24, 2012

Ain't No Thing But A Family Thing

A whole lot of races don’t allow strollers because they can get in the way of this and that. They can create safety hazard for runners and of course they are worried about the child themselves. I’ve been trying to decide what to do for the Odessa Marathon and finally an old idea occurred to me. After Kiana’s mother left, I had actually asked the Boston Marathon if I could run it with a stroller and they said no that was against regulations. Either way, it was probably too long ­to ask Kiana to sit in a stroller since it would probably be 3:30-4:00 hours. We’ve done up to six miles in the stroller but it’s getting harder as she gets heavier. I looked at previous times for the Odessa Marathon and the honest truth is that I think I’d have a decent shot of winning either the half or the full outright if I went out there but I’ve won a half so there’s nothing to be gained there and I’m not quite sure that if I ran the full that I’d be there when my mom finished her half. So I emailed the race director and asked if I could run it with a stroller that way I wasn’t sitting around the entire time my mom is walking it (this is where you can reprimand me for not walking it with her but trust me… if you haven’t been training walking as she is, walking that long can hurt). They ran it by their board and Kiana and I are the first to get permission to run with a stroller in the history of this marathon. It won’t be a PR but I’m going to leave as much as I can out there. I have a cheap stroller but I am hoping I can borrow a nice one for that weekend because well, we may have taken second in the stroller division last year’s Thanksgiving run but she’s put on a bit of weight since then (4 years old to 5 years old). I’ve also offered money to get her a finisher’s medal that way all 3 generations get one and no one will be cheering louder for anyone out there than my daughter and I will be for “abuela’s” first half marathon finish.

There are still no job offers. There was a time where I got a couple of contract positions offered that in retrospect seem like it was less than intelligent to turn down. I’ve been trading some emails with Duke and my local team and while I am a big fan of both them, and I’m happy to take some responsibility for this, it appears that my local team and them were not coordinating as much as I thought and I should have been more aware of it and encouraged it. Part of it is entirely my fault… I was nervous about how much money it would take to keep going back to Duke and I think that they thought I wasn’t planning on returning but it makes me clue in to some of the system and something Livestrong and someone from my running group encourages which is to make sure you take charge of your own medical thing. I understand that and again I am happy to take responsibility for it and realize that some of the distractions that came my way messed with me… but while I don’t completely trust my brain, let’s hope it hasn’t gotten to that level. The lumosity scores are rising still but they are still slower than what I think they would have been without the surgery.­­

I want to never complain but I do miss having my brain how it used to be a long time ago. I went on a bat cruise with wonders and worries yesterday but got there too early so I took Kiana on a quick canoe trip. We both had fun and she kept pointing out that I wasn’t wearing a life jacket even though she was. She was paddling and splashing me and I was trying to just keep things going in the right direction. Somehow I hope those last two sentences is the rhythm of our life. Still, at the event, I sat next to a lady who was saying how her husband had been there for the event last year with her two young kids and how this year he was in a hospice and how by this time next year he’d be gone. Kiana listened and perhaps showing the ignorance or innocence of childhood said, “I’m sorry… but my dad’s going to be here.” I wanted to apologize for the second half but the woman hugged her and there was nothing I could think to say, other than to whisper to Kiana to be careful what she said to people after.

It’s going to be time to make some financial decisions soon and that’s called life. And riding rides for Livestrong and running tournaments that raised money for charities and winning trophies has been a way that kept me going but at the end of the day… and they inspired others and having those concrete goals kept me going, well they don’t pay the bills. So soon and very soon unless something spectacular comes up, it’s time to just put things in their right priorities and make sure my daughter has food on her table and a roof over her head. I dared to dream enough about this to where I bought a lottery ticket on the way to the Doctor’s office but even I don’t have that good of luck.
I’ll canoe with my daughter and push her for a half marathon in a stroller. I’ll cheer for my mom as she does hers. And it will be time soon to make some financial decisions but in the end, some things in life, well it ain’t no thing but a family thing. 

Monday, July 23, 2012

The End is Near

I’ve read time cover to cover since I was 18 but recently it had a great article that I felt I could seriously relate to (http://www.time.com/time/magazine/article/0,9171,2119904,00.html). The comic referenced there is here. But the great line from the article is: Any story that can be ruined by giving away the ending wasn’t worth your time in the first place. Friday, the original neurosurgeon weighed in and said the cancer cells aren’t showing up anymore with the contrast. And he wants to monitor it once in six months and once again in six months and then once a year if it holds. He’s like me a skeptic and he told me a story about one of his patients that went on a special diet and the tumor just disappeared for six years and then he got off the diet and it was back and he died a few months later. It’s eerily similar to a story that a friend from LA told me about her brother who had a glioblastoma who went on some anti cancer diet and it disappeared off the MRI and he got off the diet and it "came back" and killed him. I’m not on any significantly different diet than I was a couple of years ago but I do eat healthier and I am going to Livestrong’s Cancer and Nutriton class soon but somehow I breathed pretty easily Friday and have slept really well since then. I am going to die and it may be tomorrow by a train wreck but for the time being… it looks like it’s not with a time bomb.

A friend of mine became a scuba diver as I am because of something I said. He asked me what the difference was between snorkeling and scuba diving and I told him it was the difference between masturbation and sex. He signed up shortly afterwards. I'd talked to the doctors on the phone and on email and somehow seeing my original neurosurgeon with models and images in person felt more real than anything else had to that point.  At the appointment Friday, he showed me the MRI’s, the original ones, the ones where the brain refilled and the “gap” in the brain that would never refill from part of it being missing, a black hole in the middle of gray matter. I’ve worn a shirt many times that Todd gave me, I gave him a piece of my mind but that was the first doctor that spent some time pointing it out, the piece that was gone. I went over some medical records there with him and over and over again, it pointed out how many people were in my hospital room that weekend by the nurses, the neurologist, the neurosurgeon. I had a few people who offered to come with me to this appointment but in the end I only took one; she was headed to be with her mom that weekend who doesn’t live far from the neurosurgeon and she was sitting there paying attention, clearly nervous and for the first time that I can recall, clearly laughing nervously at some of the things the doctor said. Her mother showed up before the appointment was up and Kiana wanted to stay longer till the end and hear the conversation but they were heading out of town. She would call later that night and said, “Dad I think you’re going to live no matter what the doctor said” and then asked what the doctor said. Having an eloquent 5 year old is something else. 

It felt a lot more real at that appointment and by coincidence I had invites to a few parties this weekend, 2 going away parties, 2  house warming parties and a birthday party (which was internet memes). I went to all of them trying to remember and keep building how that hospital room scene got created. In simple frankness, I think if my brain operates the way it does now, that hospital scene may not have been the same. I didn’t remember the names of some of the people I’ve met since then, a couple I didn’t remember hardly at all. The social skills of asking how this is going are still there but before the surgery part of the reason I had so many friends (the main reason is I love people and how fascinating they are) is that I had about perfect memory and no matter how long it had been I could remember what we last talked about and ask them about it and now I had to use a few more cues and then I asked more details about their lives. I did some dancing, some drinking, some praying since Friday. I also cleaned up the house and coached that marathon training group. I’m trying to decide what is financially responsible and physically possible to do when I go cheer my mom on for her first half marathon since if I do anything I’ve got about 2 months to train. I took down the infinity necklace that hung on the rearview mirror. I still don’t have a job or any job offers but the attorney thinks that we can come up with something relatively reasonable with the county. I’m hoping he’s not too big of a dreamer. Spoiler alert: I’m still going to die. And it may still be unpredictable and random and ridiculous or it may drag out. But I want to take that quote and self apply it that if we knew the ending and if that ruined the story, the story wasn’t worth my time in the first place.

Friday, July 20, 2012

Feeling Real

So the world class  neurosurgeon and I have traded some emails and it’s clear why he’s world class, out of all the doctors, he’s the only one trading emails with me. I’ve talked to them and even have some of their cell phone numbers but he’s the one willing to put it in print and then I can absorb it but he’s officially stated that I only need to do MRI’s once a year… Today I go see the guy who first took a piece of my mind in a couple of hours. I’ve tried to distract myself all day, car is washed, oil is changed, overdue inspection is done. Laundry is done. Check book balance updated… not looking good but trying to keep in perspective that people lose jobs, people sell houses but I am putting that off for a little while and am going to sell a couple of things as push comes to shove that I thought would be there forever but what do you do…

I am not superstitious; I’m just a little stitious but there was a party at my place with people from the running group I’m coaching and for the first time ever period that night I believed I was going to beat this and I said it out loud… and then Monday the emails from Duke started coming. I am not sure what it was about that night, some mango margaritas I made, some people who I was meeting for the first time who had no clue about any of my health problems, a little bit of dancing that broke out in the living room to we are young, that made me feel like just a random dude and while I’m glad to always help and be a survivor that was the first time I ever said and believed, “I am going to beat this thing.” It’s obvious in some of the interactions why Livestrong and other organizations tell you to control your own health disease because some of the doctors I thought were talking… well they weren’t. This at some level is scary for me because what happens if my brain failed or fails… but still. Still, somehow going to see that first neurosurgeon, the one that gave me permission to go running the night before the biopsy on hospital grounds while nurses supervised (they realized how boring it is to watch running) and I may have snuck off and done the training run that marathon schedule required. Still, somehow if this guy tells me we have to go monitor it once a year, the guy who first told me I had a tumor face to face instead of an email it will finally sink in.  When he first told me, in my so well appreciated coping mechanism, I told him to rub some dirt in it. I am eloquent at some level, cracking jokes after the seizures that I don’t remember, telling people that I love them, that they are good looking, apologizing for ruining their birthday,  but there have been moments in life where I had nothing to say and oddly enough (at least all the ones I can remember) where good moments. In order of condescending importance, at the end of 2 Livestrong events the guy with the mike came and tried to ask me my story and I said something along the lines of how awesome Livestrong was and call it oxygen deprivation, but I couldn’t think of anything deep or clever. Another was when my friends handed me a check that would pay a proportion of all the last couple of years have costs. Another was the time I was handed that certificate so long ago for a full scholarship to college where fascinated by people I chose psychology instead of a more practical degree. The other was when I met my father for the first time at age 15. Two more were when I got a yes to a proposal and when the I do happened a few months later. And the moment when I stood in silence the longest was when I first held a child that somehow fitting in my hand just changed the universe in an instant. There’s a long standing remark that women become mothers when they are pregnant and men become fathers at birth. I lived that remark.

A few people have offered to come and I’m going to take thorough notes but I’m only taking one person, the person who I hope these matters most in our lives, a little girl that keeps me going. I still haven’t told  her anything but when I went to have lunch with her, a little boy was giving someone a hard time about not having sunscreen on, that they should put it on or they’d get cancer. And with the innocence that only children bring she announced that her dad had brain cancer and a new daycare worker asked me what it was and stated that her aunt had this exact type of tumor in her left temporal lobe when she was an infant, that her aunt died at a young age which she said discreetly but Kiana still caught. I took Kiana to the side and told her to come with me to this doctor’s appointment and she said okay and said it’s okay daddy, you’re going to live. She’s said this before and so have other people but the simple truth is that until recently I’ve never believed it. I hope this appointment today ends with me acknowledging that they were right and I was wrong.

People ask what I am going to do if I finally buy it and I am going to find somewhere to dance tonight perhaps with just the reality that we are young and we’ll set the world on fire (http://www.youtube.com/watch?v=Sv6dMFF_yts).

I still haven’t found a job but I’ve come up with a plan if an offer comes for that 10-9 one comes… I’ve found a babysitter who will put Kiana to bed but every day with incredibly rare exceptions I will use my lunch to come see her and every morning I will get her ready with ease and enthusiasm and since it’s a Monday-Thursday job, you better believe that I will be there at her school on most Fridays until she gets tired of it. If it comes, I probably will retire from running marathons and things like serious athletic events because I can’t properly train to be competitive with that work schedule but I can properly provide and want to be there for this kid. When Livestrong originally asked to do that video, I was a little annoyed that they focused on the relationship class level because I wished they’d focused on the guy who puts off brain surgery to run a marathon, comes back and wins the cancer division etc but I think they were right and it doesn’t matter how few athletic events there are left ever as long as this child is provided for as best as I can and as best as I know how. 

Wednesday, July 18, 2012

Still Running

I think a job offer is going to come that would require me to work from 10-9 Monday through Thursday. I need to pay the bills but I tried to talk to Kiana about it who was adamant that she never wants to move and somehow that is my driving factor, my compass, my north star. So I started applying for other type of jobs that were more regular hours that would let me be with her when she’s not in school and there was a temporary position with an emergency management services. I literally worked in this type of job for years in college but they had me take an online test and while I’m not sure how other people do… I realized it felt less than an honest to take a job where missing auditory memory recall issues could mishandle someone’s emergency because I didn’t do what I would have done a few years ago. I know this sounds strange but literally it’s better in person to talk to someone. My IQ went up, other things went up when this got removed but it’s not the right thing to do, even if it pays the bills to potentially damage other people’s families to protect your own.

Still, he recommended some things from memory and was glad to hear that I was still running. He recommended some different things and I acknowledged to him some memory issues like the fact that there was literally someone who I’ve known for the better part of 2 years though I met them shortly after the surgery and I couldn’t remember their name and everyone thought I was just joking around because well her name is the same as my previous spouses. My favorite part of the email exchange was "I am glad to hear you are still running. I am not near the runner you are, but I certainly enjoy my runs and they help me with my thinking. I would encourage you to continue to run." That certainly helps me feel better about the track workout last night. Either way, he formally made the recommendation that we only need to do yearly MRI’s. Tomorrow I meet with my original neurosurgeon and hope that we’re all on the same page… and if we are do we celebrate, get drunk, go home and breathe? I don’t know but either way I’m running Saturday morning.
I got reprimanded about how I need to be more patient with the job situation that these things take time especially if you haven’t interviewed or created a resume in years and weren’t expecting it… and I want to be but I’ve just been chipping away at my rope for a while and desperate times call for desperate measures… but I don’t even know what those are…  What are the right measures here? I think about selling my car and that would buy me a couple of months? Get into debt? 

I have gotten accolades for running and raising money through athleticism and the kid who was super nerdy still struggles with this being such a big part of his identity… but I’ve gotta get back online and apply for some jobs and then I’m off to do a track workout.

Tuesday, July 17, 2012

Quincy's Cure

I turned down the county's offer... the problem was simply that 2 months worth of Cobra expires in two weeks and some of the things that had occurred were not started to research until about that long ago and then as has probably always been evident, I don't want to drain the very few resources I have left to treat a disease and the scars it left me with. I signed with an attorney and took the coin flip. I think he's rather go for more but I would have taken the offer with a little more Cobra coverage... the terror at some level has won.

There were some things lost in the surgery... that because of the circumstances after I may not have noticed in due time or perhaps I wouldn't have noticed it anyway. It shows at some level how deep the commitment to trying to figure out the brain that the neurosurgeons have been the ones who have called and emailed me the most out of all the doctors involved, more than the neurologists, oncologists etc... But the email I traded with the guy from Duke, while I will leave his part out for patient/doctor confidentiality, I admitted something to him that I honestly don't remember if I've ever put on here. I've shared it with friends and definitely withe the minister I meet with each week but while the rising lumosity scores give me encouragement and I'm somehow incredibly nervous about this Thursday night if I'll get any sleep before the second opinion, that I gave them a piece of my mind is still true. And who knows how much of it will come back. But in response to what my cognitive difficulties were I wrote back:

     "My cognitive difficulties are mostly memory and language. Part of the challenge is that people are where I've primarily made my living, my degree being in psychology but I meet new people and can't remember them at all where I used to be able to meet them their name and every detail we talked about. I learned to cheat/compensate on some of those things by little things like a smart phone and making far more detailed notes but the simple truth is that I'd been working with juvenile delinquents for several years and now when I'd go meet them in the lobby I couldn't remember which one they were etc or remember them at all; this isn't consistent, some I remember thoroughly and some I couldn't have recognized at all. I made a couple of mistakes at this at my job that were memory based and it cost me the job (I was unexpectedly on the stand, this has happened a lot over 6 years working there and I remembered something wrong and it cost me my job). I had talked to both a counselor and coworkers about it but despite my local neurologist and neuropsychologists having recommended neuropsychological rehab my insurance doesn't cover it all so I've been doing things like the iphone andlumosity.com. I also have issue-s like when my daughter, a 5 year old, asks for things like orange juice I go and pour it and then drink it and then go back to doing what I was doing what I was doing until she reminds me. I go into the garage to get something and in the short walk can't remember and then when I get back in the house I remember what tool or such I needed. I leave things outside or my garage open. These are the ones that come to mind easily. I seem to not be able to find things on occasion that are the same color resting on something else and can spend an hour looking and not see it and then it's there without anyone having moved it and incredibly obvious. As you know I put off the surgery to run a marathon and I used to just look at the route once and be fine; now I look at it thoroughly and still sometimes get  lost. On the language thing, I say things where sometimes people clearly know what I'm talking about but I say something completely different without recognizing it and people like friends point it out and others don't. I've sat with a counselor over a year talking about what the right way to share this with my job but did so fairly minimally because all of the initial seizures had policies re-written etc and I'd been put in a back position and wanted to leave but the county had decent insurance.  "

You have to wonder if more honesty with my previous employment would have made things better or worse after the collapse on the side of the road when the human resources person said directly not to tell them anything I was being careful about unless directly necessary. The guy who had never called in sick, and maybe overshared this, is starting to understand why people have some level of privacy about their illnesses like ones that are random like cancer and ones specifically related to the brain. Hell, some of this stuff it took me a while to admit to myself and others to share out loud just out of some basic human fears and others in what I've said here before that this would turn into I am Sam or Kramer vs Kramer.

There's still no job offer that I can take and be a single parent. I keep fearing that my life will turn into Les Mis where there seems to be a huge highlight point followed by literally poor circumstances all the way to death. I am nowhere near giving up but some things in my brain and in my approach are chipped. I do want to still try to destroy that track meet tomorrow and defend my titles in various things but in the end, I am learning quickly and painfully money makes the world go round. I caught a movie while waiting in a lobby, John Q about Denzel Washington playing John Quincy who essentially becomes a terrorist to save his child's life by giving up his entirely. 

This is what that guy was willing to do in this film to provide for his child... my mother, a single mother on her own, left me alone a lot of the time to work two jobs and I was raised partly by her and partly by uncles and grandmothers and grandfathers which I loved that woman and missed her and well I didn't understand till now that providing is sometimes all you can do. So much of my family's men weren't there so they could be away paying the bills. They really didn't  have much choice in the matter. In the end of the film, John Q tells his son get whatever job you need to, even if you have to compromise some part of yourself to make sure you provide adequately. That's a heavy request... but it may be something to buckle down on soon and realize that something's gotta give. How do you make that decision?

I am nervous about Thursday night because Friday's second opinion may keep the world spinning erratically. This morning Kiana whose mom still misses visits and phone calls for reasons I cannot understand has stated that she doesn't want to visit her mother and neither my cousin nor I could get her to explain why. What do I do to fix the world, to protect hers?  

Monday, July 16, 2012

Two in the Bush

An old argument about well if we do that then the terrorist win if we do that and if we do that then they win, and there’s the counter argument that if we sit there and make decisions based on that that they won no matter what… Today was an interesting chapter. The doctor from Duke and I traded some emails about the latest news and some of the developments of the last year… I am still fascinated by the fact that a world class neurosurgeon has personally emailed and called me more than some of my original doctors did. I guess that’s how you get to be world class. On Friday, I am going to sit with my local neurosurgeon and that night I’m going out no matter what I am going out that night… and breathing somehow.

My old employer offered something today… which shows that they realize there is some wiggle room in culpability or at least want to avoid future hassle. They are offering to let me resign retroactively and pay out all my sick and vacation hours that I had accumulated (they don’t pay all that out) and, in apparently an atypical offer,  to pay for Cobra for 2 months (so essentially 2 weeks from now). They state they can’t donate money to any charities for me. They gave me a day to mull it over before they formally respond to my appeal which if they say no opens up a lot of ways that make them vulnerable… I countered back with that if they did six months cobra and haven’t gotten a response… At some level, as I tried with the divorce, I kind of would appreciate a clean break up and we move on but what if I don’t have a job somewhere down the line. But it would come with a letter of recommendation and then it’d be a clean break up. At some level I realize that the offer for Cobra for 2 months is awfully tempting… a bird in the hand (or in this case 2) is worth more than one in the bush but that also expires in less than 2 weeks; funny I’d given myself an expiration date of July 15th and the cancer news from last week comes a few days before and this comes the day after. Showing my “priorities,” I countered back with more time on Cobra which I haven’t heard back yet. But at some level maybe it’d just be… over and done with. After the last year and a half, somehow that’s easier to deal with that something is cleanly done with… I haven’t made a decision yet but I am mostly leaning towards it just to have health coverage longer… You have to wonder if the terrorists are winning.  

I am meeting with a recruiter tomorrow and the 2 job possibilities that looked most possible won’t work if I want to stay being Kiana’s primary guardian… there are going to be some serious battle scars from all of the last 18 months no matter what the outcome is. For the first time ever a week ago Friday, I said to someone that I was going to beat this cancer thing… and now we’re here just a few days after that with that being a real possibility and some other gambles. On Friday, if the neurosurgeon that I’m sitting with thinks we’re right well, I am going and buying a lottery ticket. I’m not too broke to afford a dollar yet and that one in my hand well what will it be worth in the bush?  

Saturday, July 14, 2012

The Idea of You

My “sister” Susan and I a long time ago sat and talked about how her husband was struggling due to some injuries that may not allow him to continue his cycling habit with identity. She stated he had a hard time staying  “I’ve always been a cyclist… if I don’t get to be that anymore… than who am I.” I responded back then with, despite always have been in athletic events, that I was glad the biggest part of my identity wasn’t athletic which had to give but that it was my relationships and my intellect which perhaps would take some chips but I thought it would hold mostly solid… fast forward to now…

My intellect is chipped at some level and while my overall lumosity score is up… some things are down. The game I struggle with the most is one where you’re supposed to be a waiter where you remember old customers and their orders… I’d built my life around relationships with my friend Street saying that people were clearly my biggest hobby. I struggle with attention and there are some jobs where I might be otherwise qualified but I haven’t applied because I don’t want to be the devil in the details that can’t be done. And while that part of my identity I’m starting to get some confidence because of the lumosity, I’m also still wondering how the kid who was always nerdy… is missing part of his brain.

I sent the neuropathological reports to a couple of doctor friends… they have always seen medical stuff and neither of them is their practice but they can look at it as recent graduates and talk to friends about it and be completely na├»ve and blunt because they have no liability issues. One things maybe it was always a misdiagnosis and if that’s the case then at some level I should possibly be more worried because then we have no idea how we got here. The other one said that I think you had cancer and somehow you’re just a statistical anomaly and there’s no way to tell you anything about recurrence since your tumor was 3 in a million to begin with. He joked about how it’s too bad that my favorite show House got cancelled cause maybe I could have tried to make them figure it out.

And next Friday, I am getting that second opinion and the one doctor that I didn’t want to replace out of the random lot I drew and I are going to sit together… he’s having John Hopkins Dr. Berger, apparently a world renown neuro pathologist and the Duke guy talk and try to figure out what the hell we’re doing…. He was the guy that did the biopsy, the guy who had to hear me say as my first reaction, “Rub some dirt in it.” And in the end, he knew what was at risk and to his credit (discredit?) he acknowledged he didn’t have the skill to take something on in that part of the brain and tried to pass me on to a friend in Dallas but I chose to go to Duke. I trust him a lot and had he not passed on doing the surgery… I am not sure I would have gone to Duke. Says something about these guys characters that I literally have cell phone numbers for him and the guys at Duke and my neuropsychologist gave me a book about memory, something he states he’s never done with any other patient. I’ve still not told Kiana anything and I’ve still not really absorbed it as “real” thinking that somehow when that second opinion comes in that maybe it will conclude and finish with the same guy and that unlike I’ve been thinking for a while that I will go back to thinking that for the time being my future has a clearer “Cause of death-unknown.”

I’ve lost a lot of things in the last 18 months… a job, a spouse, a part of my brain, some friends because of single fatherhood and them realizing that a guy who doesn’t have that much free time is less fun to hang out with, the guy who used to run every ultimate tournament in Austin rarely plays anymore, and I guess I hope/ am nervous/dream about the possibility that I am about to lose a cancer diagnosis. Oddly enough it was literally within a month of me finally starting to get comfortable with the label of living with it…

But while ideals are great and ideas are a way to chase them… I created a playlist a while back, full of slow songs called exactly the same title as this entry, the idea of you which was stolen from a brilliant play(http://www.ocelotfactory.com/parakeet/idea.htm ). It’s a brilliant short act but there are of course 8 songs on the playlist where I tried to reconcile how different my ideas and realities had turned out to be and so quickly. Some of those songs have been previously referenced but I guess on Friday I am hoping to be singing one of them, it’s a brand new day, for the first time in such a long long time, I know I’ll be okay.  

The guy who didn’t want to define himself as an athlete that day so long ago… went to the Luke’s Locker all come track meet where between Kiana and I we did every event. Like I’ve done at every one of these I’ve done events I’d never tried before, realizing that new things are challenging, exciting, frustrating… For the first time ever I did a couple of field events. Kiana did her first mile and had to be stopped around the corner because she kept going… so somewhere she got those endurance genes. I have them for running; I am trying to find some way to keep using them emotionally and psychologically.

More than one person has noticed that the idea of a significant other pops up way too often on here… part of that is that this was something just as damaged by all this in me as anything else. But… I’ve also kept it front and center at some level so on Friday, no matter how this second opinion goes, I am taking that forever necklace down that sits on my rearview mirror and taking those livestrong rings and I don’t have the heart to throw them away but I’m going to put them in a safe that my bank provides me for free as an outstanding member (read, I owe them tons of money for a mortgage, we’ll throw you a free bank box 15 miles from your house). If it comes, it comes. Unlike the new events which I’ve signed up for, I am so far away from being able to take a real swing at that and thinking maybe George Clooney’s ideas aren’t so bad.

At my 30th birthday party, I joked about how if you’d told me to guess my life from 20 to 30 I would have gotten it all wrong except the person next to me. Between 30 and 31, I would have gotten that wrong … she’d be gone a few months later…except there was still one little girl who ran a mile with me and starts kindergarten… Between 31 and 32, I would have gotten a bit more right but still some gigantic misses… I am not going to try to guess anything between 32 and 33 but going to be open to some new hurdles (the only event I haven’t done at these track meets is hurdles and I will do it at the last one, using it as warm up hoping I can break a 5 minute mile at it but I’ve learned quickly trying to take 8 seconds off on a mile is a long long time but matching my life, the only event I pr’ed in that I’d done before at this decathlon was my 8th one, the 800 with a 2:23).

I gotta find a job and pay the bills soon and very soon, tomorrow is the panic button date…who knows how long some ideas will last… how long some realities will but I hope to be able to take them and afford them.

Still, I am struggling what is the idea of me? What is my identity? I don’t know… Pentti Saarikoski, a Finnish poet who wrote a serious of poems where the series was called “What is actually going on?” He wrote why I write: “By writing I create an identity for myself. Without it I wouldn't feel being anybody, thus a personality. - It's not as much a question of self-expression as a need of finding yourself.” Here’s hoping Friday is not heart breaking. 

Wednesday, July 11, 2012

Performance Index

Most people won't get this or understand or call it superstitious but for the first time since the surgery today my BPI (brain performance index) went higher than it's ever been on Lumosity. Confidence, belief, comfort, whatever you want to call it matters in how your brain operates in my book. As I’ve sat here and wondered what the hell is going on and still trying to absorb it, I still played the brain rehab games today. I emailed the letter to some doctor friends and still trying to process that this may all just now be an inflammatory tissue left but somehow that lumosity score was somehow higher than it’s ever been was heart warming. I’ve had some nice emails and comments on facebook and calls about being alive but, let’s be clear, I’m still going to die and all the way down to death I want to be the best I can be mentally, emotionally and physically every day in every way that I can. 

I traded some emails today with friends and family but I was surprised by one from a complete stranger and some of the stuff we talked about is probably left between “stranger friends” but it was an incredibly sweet email to start it:

Hi Iram,

Not sure if you remember me or not, but I found you through a donation to Livestrong and have been following your blog since about Christmas time. Reading your posts has been such an emotional adventure for me. Much more so than I could have ever imagined. I feel like we are old friends and that I have known you for a long time. The reality is that I just know what you have written and you know nothing about me. However I want to thank you for sharing your life so openly through your blog. Last night I was sleeping when my boyfriend woke me to read your latest entry. I was and still am completely shocked. I was breathless, confused, amazed, and overjoyed as I read your post. I was at a loss for words and could only seem to cry. I was so happy after reading your post I could only manage tears. I obviously have always hoped and prayed for the best for you, but never even thought about something like this happening. I am sincerely happy for you and just wanted to send my congratulations your way. Life is a certainly a mystery. So much to be thankful for and thank you again for sharing your journey. –

The rest of the emails interestingly enough were about the job and the girlfriend and she was telling me to be more and more open to the possibilities and thought I should visit her family with my family and do a race (apparently she’s crazier than me and runs ultra marathons). That idea of an ultra marathon hasn’t stuck in my head but the cycling, if I ever get a bike has gotten the idea of a triathlon or duathlon in my head. She appreciated the rawness of this blog which frankly it is because I am talking to me in case the memory ever fails and now that I’m less worried about it failing very quickly (be assured I’m still worried); there are in fact references in here that only I can understand to test that memory. But even if that massive failure memory never comes, going back and reading it, catching slices of time I think is worth a record of all this until/unless a “new normal” is ever achieved. She was kind enough that she can’t wait until the story has that new girl and those new job great elements. I hope she’s right.

But with that said, I realized after the emails that I had a conflict on July 23rd of both the cancer and relationships class and the last track meet… and I sat back and forth on which one to cancel… and finally I emailed Livestrong and canceled my reservation so that in a couple of weeks I can go to the track meet but I emailed the counselor who works with a lot of these classes and asked:

1)      I think I mishandled the way I did this with my cancer stuff and relationships... since the divorce I had gone on a couple of dates with a girl and then my MRI showed something strange and I cut it off almost instantaneously... A few months later I went out with a girl from my running group and then I was found collapsed on the side of the road and literally, despite her coming with me to the MRI that night and starting to wear the Livestrong bracelet the next day, within 48 hours of that I told her that we were better off as friends. Maybe it's the same instinct I had that drove my wife away but it seems I keep trying to protect people when I'm reminded I have this thing in my head that I never saw coming and can't control, how, when is the right way to share this better? 
 As you know, I got some surprising news and am still trying phone calls and emails with doctors (by the way the medical phrasing is that all that's left is that now the findings favor an inflammatory process which can be followed by just a local neurologist. I've called my mom and my family but again from some of the poor phrasing I used with my daughter (I had a booboo in my left temporal lobe) being directly contradicted by your parenting with cancer class about not using the word booboo because it's not an everyday thing (they were so right about that and I wish I'd realized that you know not a year and a half later), what's the correct way to tell her about the new development. 

By the way, for whatever it's worth, when I called Livestrong I was offered medical answers and connections to Imerman, Wonders and Worries, Counseling etc. I took your medical recommendations and ended up at Duke and then tried to protect everyone else from it as best as I could. I eventually would do all the things you guys recommended and wish I'd listened earlier. Obviously living in the past serves no purpose but I keep attending your classes because I think you guys do amazing work.

I wish I could figure how to do things better with my ex to this day so that somehow makes me feel less guilty, maybe she just couldn’t handle the stress. She continue to fuel the fire of staying alive for my daughter by doing something that was to me so inadequate today. During the past extended summer visit (she gets 2 15 day visits), I went to visit Kiana and she literally tried to get the daycare to stop me from visiting or taking her out for lunch which them and I found bizarre. so for the two weeks she has her next time she won’t be putting her there or taking time off but putting her in one near her place. I am not sure what happened to a woman I so thoroughly loved but it continues to help that I don’t recognize her and I’m figuring out a way to stay here for this little girl whether I have 1 day or I get to live to be 88. I am never going to spend an ounce of effort to keep my daughter away from her mother but I am also not going to respect someone doing so with no gained time with their daughter. No one says on their deathbed I wish I’d spent less time with my kids.

Should I have gone to the class again instead of the track meet again? I’ll never know. The blogger got blogged about today by Livestrong, the other story is way cooler (http://blog.livestrong.org/2012/07/11/inspiration-comes-in-two-forms/?utm_source=twitterfeed&utm_medium=twitter). Somehow the track meet is a little easier because there’s more concrete goals… if there was someone I was with and trying to make my relationship with them more coherent I’d probably have missed the track meet (let me put it this way,  not too long ago I missed a running event in order to attend a Cancer and Parenting class).

And the job as has been their pattern wants to drag this out so tomorrow is the deadline I set for them. I imagine they aren’t going to be ready to do it on time and so on Tuesday I am signing something with an attorney and it will drag out because maybe sometimes thinking you don’t know everything and trusting someone else to help is smarter than you. It’s funny I’d set the deadline for July 15th about job, house selling details, work details etc. This wasn’t on the agenda and it came a few days before that and messes with all that. My life is very very strange. But I’m going to keep going, keep keeping on, trying to get faster, trying to raise that BPI, trying to Livestrong, trying to remember that to whom much is given much is expected, and stealing that little girls nose and letting her chase me around the house to get it. And they don’t measure parenting but I hope that somewhere down the line I get some index that I did something right.

Tuesday, July 10, 2012

Shock and Awe

So traded some emails with Duke yesterday the first one which began from them with No Tumor and a bunch of pathological information that essentially states I don’t have cancer. I wrote back with a bunch of questions…and asked for a call and they responded with who did I want to talk to… I wrote back, in my always humble fashion, simply with someone smarter than me. They said I had so many questions I should think about coming in but I’m not sure I’m ready for a flight and more medical bills. The emails  just put me in shock with a few people asking what was wrong yesterday and me not really answering anyone because I was afraid, nervous, something or other to say it out loud… when the first email came I ran 5 miles… and just put my ipod shuffle on shuffle and over reading into the universe as I usually do focused in on one song that I kept listening to over and over, “Rain” by Creed came on (http://www.youtube.com/watch?v=3k3jxi4JhXA ):

I tried to figure out, I can't understand...
What it means... to be whole again...
Trapped between the truth and the consequence
Nothing's real, nothing's making sense...
Fall down, wash away my yesterdays
Fall down, so let the rain fall down on me...

As the emails kept coming I wanted to call my mom or my brothers but it didn’t quite feel real. So I called Todd who organized the tournament, Susan who got my tattoo. I forwarded the email to Matt from Hawktober, called Kelly from the BrainPower5k. I talked to the headcoach of the marathon training group I’m part of. This wasn’t real right? This was inception where it’s a dream within a dream or maybe I’ve been in a coma for the last few months and this is all just not true. I’ve joked forever that if someone took me out with a two by four and just carved into the side of my head I’d know no better. I called the pastor I meet with and he thought it was great news. Susan said I sounded more shocked than when I called to tell her I had cancer, that I’d kind of assumed I was dying and that having this was something that I didn’t expect to not have.
I requested all my medical records than requested a letter and while the letter is not as cleanly phrased as I would like when that arrived it felt real. That letter arrived today and whilte it’s more awkwardly reading than I would call elegent, at that point it felt real. I called my mother and brothers at that point. Kiana was here but I still haven’t told her because I don’t know how to… I called wonders and worries to ask for some guidance. I drove off to drop something for a friend and then just was driving around… and around… and around… and finally I drove to Livestrong to talk to a counselor but I had no appointment so one only could talk to me for a few minutes. A couple of the people who knew me immediately asked if I was okay, that they’d never seen me look that off… I told them and they were just surprised. The woman who I’d gone to Davis with put their facebook status in reaction to it: (http://www.facebook.com/photo.php?fbid=10151021881999916&set=a.55657659915.61916.6195089915&type=1&theater ). A thousand thoughts ran through my screwed up brain Is this true? Was it a misdiagnosis? At some point, I even told the guy from Hawktober has this all been a fraud should I return this Cancer Survivor trophy? Let’s just say that even as you read this you can probably tell I’m shell shocked. And I’m skeptical. I’ve sent the letter and the pathology report to the local neurologist and the guy who did my biopsy and somehow want a second opinion, a third one, a twentieth one…  Duke’s comfortable with me not returning and just following it locally but somehow if I get that second opinion I’ve asked about doing it somewhere like MD Anderson or John Hopkins… Somehow my inner gut is arguing more that this can’t possibly real more than I did about the diagnosis… (Speaking of Duke, disappointingly they chose not to be a center of excellence which would allow those with this in the future to go and/or reimburse me because they get a lower rate of reimbursement).

Before these emails had started, I was sitting there talking to the Travis County attorney about renegotiating my departure and we discussed an option that would theoretically keep me employed for longer and resign with a positive recommendation and keep health coverage a little longer . Who knows if any of this will come true but I think what they were most shocked about was that as part of the requests was that they make a donation to Livestrong and/or the Brainpower5k of $500. Who knows if I’ll get any or all of what I ask but oddly enough I got something from Duke that I never thought was coming.  If the job offer works out the way I want, I’ll probably take a trip to get a second expert opinion but I also want to take a trip where I just relax. Susan suggested I take someone and do something like climb the Grand Canyon but who would I take? As I talked to her I realize if I ever get my finances in order again, the one trip that I absolutely want to do on a bucket list is go to Brazil because that’s where I was going to go from the surgery and I literally changed that flight to the flight to Duke…

This is all overwhelming and I have to realize I still have to find a job and pay bills and do things that everyone does. Life on the moon couldn’t be any stranger, life on the moon couldn’t seem so far away, the life that I knew is through and I’m going to need you more than I’m ever. I’m alone in a crowded room, it’s like life on the moon.

I should be thrilled right? And I am but mostly I’m skeptical, relieved and confused… I hope this is true but I fear that today’s hope is just veneer for yesterday’s disappointment…  Ironically I’ve never said that I would beat this to anyone, just that I was hoping to get to 40 as the Duke neurosurgeon originally said… call it superstitious but I literally said on Saturday to someone for the first time ever, I’m going to beat this thing and then Monday I get the emails, today I get the letter with a signature that somehow made it feel almost real. I joked at Livestrong that cycling must cure cancer, I joked to someone from the marathon running group that I started coaching that clearly they were the cure to cancer, I played with an 8 ball, people told me I need to thank whatever deity (or their specific one). I wanted to celebrate but don’t know how so I went to a track workout… if you read this, today’s the right day to tell me how to celebrate because I am in shock and awe.

Sunday, July 8, 2012

Old Writings

I've had many careers and fears throughout my short years and I foundtwo  old writings while looking through things... perhaps reflecting my damaged memory, I can't remember if I wrote these or found some of these (clearly remember on most). But the kid who is very much trying to find his way was fascinated by some of these old things... As I've kept a blog of the last year and a half I dug back a little further... and realized it's good to have slices of time that show us that unlike the naive idea that today's emotions, today's ideas were always true and will always be true, one of my favorite (and most scary) elements of Big Brother is that we think this, that whatever is true today was always true (Eurasia was always at war with...). It may be comforting to think that there is destiny, and that things are meant to be and maybe somethings are but maybe that's just how we get ourselves to sleep at night rather than live in the shoulda coula woulda's.

These writings have nothing to do with much of the present but just to go where have I come from and where am I going, what makes it worth it. We all change but that doesn't mean it's an improvement. Lance Armstrong is under investigation for whatever but the way he changed the sport was that he chronicled where his heart rate was, where his muscles were, how they ate. I did this once during marathoning and while nothing in life is completely predictable (trust me on this one), some of it has a strong pattern. Or as Mark Twain more eloquently put it, history doesn't repeat itself but it often rhymes."

These are not meant to flow but to make me remember to remember and to remember to keep writing:
From the days of being a pastor
In Lewis Caroll’s classic Children’s Story, Alice in Wonderland, the White Queen asks Alice to practice believing six impossible things before breakfast every days. Every year during Christmas time, I often think that Christianity asks us to do a similar thing by accepting the Nativity Story. Our faith requires us to believe that God traded power for pampers and glory for Gerber. It further demands that we believe virgins give births, wise men chase UFO’s across the desert sky, and shepherds are touched by an angel choir. In all this absurdness, we are asked to accept that manna became man, that eternity stepped into time so we could understand that God the father had a human heart. I am unsure as to when this would be harder to believe, whether it would be in our own present skeptical age which often dismisses religiosity as silly or if it would have been harder to trust as truth in the early ages of Christianity, when the Christ was just a snotty, crying infant. Although I am unsure, I would like to explore the idea that those who first accepted Jesus as a crying infant into their lives were giants of faith, great contributors to the redemption of the world. 

From the fears that the kid who brought his dog from the South Pacific, has pulled off a few firsts and has always been as a mathematician friend says an outlier

And so the attempt to make the world into a vision of one’s own
Turned out to be a myth, leaving one empty and alone
Big Brother never seems to lose, victory he always claims
And those who dare to rage against him find they are forgotten names
Conformity must be the rule to those who wish to reach success
Whatever falls not within in the frame the heart must not express
What a high price we all must pay to color inside the lines
And all the joy outside of that imagination confines
The power structures never shake, their foundation’s solid ground
Those who think they make a roar make but a momentary sound
We remember only those whose ducks were in a row
Who never wavered never failed the party line to tow
Whose lives were examples of all that we could be
Look how great your life will grow if you are just like me
Great minds may dare to have a single creative thought
But find that challenging certain ones is not something they ought
And in the end that which we’ve made first place
Is that we must all run the same to be in the human race
A hope that you might be different is a ridiculous token
They take the challenge, ignore it and your soul they leave broken. 

We like cheering on the non conformists... but their history often rhymes in that they lead challenged challenging lives...