Thank God and Fuck Yeah

One month… without brain cancer appointments… for the first time in 2 years. We are working on scheduling an appointment where we work more carefully on the seizure monitoring since we’re less worried about the cancer and because that’s the biggest issue on the custody thing though to me it’s a lawyer trying to find a way to be what in my opinion is in the best interest of my child. Let me state this clearly. I have never though that Kiana’s mother was a bad mother. Do I think that a mother who walks away from her child that easily no matter what the parents problems are is thinking rationally? No I don’t. Do I think someone who leaves a 10 year relationship while someone isn’t cleared to drive or work and has to be supervised was at the top of their game? No I don’t. Do I think those same characteristics show in someone who all of a suddent is asking that I only have supervised visits? Yes I do. As the livestrong video states (www.livestrong.org/iram) I think many many of my actions helped her disconnect and working in families where parents seem to disconnect from their children because they are half of someone else, I think (and this is only an opinion) that she disconnected some from our child as well to be able to do so. Psychoanalyze that however you want.

With that said, let me state that Kiana’s mom was better on the emotional side when this all started than I was by a mile if not by a marathon. She wanted us to go to counseling. She wanted us to enroll Kiana in wonders and worries. And as I’ve said many times, I worried far too much about the financial stuff and not the other items and I was wrong to not focus on the bigger picture. Some of this stuff takes time. Livestrong staff have told me that many of their clients don’t show up until after treatment. and that it's often the family members who are hit hardest. And obviously I've been fairly stoic through much of this process. Kiana's mother absorbed it faster and I wasn't there well enough for her. Yesterday I went to Livestrong's cancer transitions program. Changes in life take time to absorb. 

Why did it take this long to accept some of the time off work? You're talking to the guy who snuck out of the hospital to run, put off brain cancer surgery to run a marathon, and went back to work as soon as possible. I went to work the day after they found me collapsed and took minimally time off after both times my brain got cut into. I was pissed when people handed me checks and gift certificates. It took time to realize that doing this alone is dumb. I understood the old phrase that its easier to give than to receive and you can see some of the obligation I still feel from the cancer stuff I help with but also believing that at some level it reflects that if we don't all hang together we'll hang separately. Does anyone think I run because it’s awesome? Running is a place that still works and yes talking about myself is where it still works. This has made people wonder why don’t I have a job. If talking about your life and running well paid the bills and came with health insurance, point me there right away. But let’s be frank, those are skills my daughter has.

As I woke up this morning, I made waffles just so that I could say in the morning I’m making waffles. I put on Christmas music. At lunch today I’ll meet with the minister I’ve met with for over a year. And I called today to schedule my next appointment with my local neuro oncologist, January 22nd. I am trying to set up an appointment with another doctor who is far more specialized in seizures since that’s the argument Kiana’s mother want to take. There are many studies that if I was a millionaire they would do just like neuropsychological rehab was once recommended but the insurance never approved it but I will also take raw direction like I have with lumosity. Interestingly enough, they along with all my doctors got a Christmas card. Lumosity wrote me back and they want to do a feature on me for their website. Surprisingly enough, they got consent. I am not all I used to be but I am okay with the feature because while some things to quote a doctor can’t be helped because they are structural not chemical balance, I am still trying. And honestly, in some features that just make life easier more fun, I am probably better due to their website.

Tonight there’s a lecture at UT of 40 years of the war on cancer and I hope to get to it if I find a ride. Tomorrow I run to train for the Livestrong marathon. Cancer and it’s side effect picked the wrong guy to have a fight with. I loved and love Kiana’s mother but I’m not signing up for less time with her while I’m stable.

Still my emotions today are both thank God and fuck yeah. If you think that getting your brain cut into a couple of times, getting dye injected into it regularly to see if your best organ is turning against you, taking pills twice a day so that you know you won't wake up in an ambulance, sitting through over a 100 medical appointments where they draw your blood and test how well you walk, talk, shift, remember... yeah it's going well and for that I am grateful. But the process itself has some annoyances and to avoid it for a month brings some raw emotions and if you can go through it with only wholesome cookie cutter statements, more power to you but I am glad to have both sides of the human scale, the sophistaced grateful stand but also the raw fuck yeah scale.  Judge me accordingly. The appointments never stop and appropriately enough of course there was a bill from Duke that arrived in the mail yesterday. If we ever have a month without bills or appointments or phone calls, it’ll be a bigger thank God but also a bigger fuck yeah.

Kiana’s mother’s attorney thinks that I have no right to deny her my medical records and thinks that I don’t know Texas law and wants me to tell her what law is protecting me. Judge me accordingly. But Rule 509b, Texas Rules of Evidence protects me from handing it over without a judge’s order. If a judge wants to make their case why they are over ruling Texas law, I’ll accept their authority but the opposing parties counsel has none in my life. The reason I don’t do it by the way is not because of anything to hide but because the impression I have of her attorney is that she’s trying to find some technicality. And I believe with every ounce of my being that the best parts of me have been for Kiana. I’ve given up running teams, serving on boards and many things I did this before that to make sure I don’t miss a moment. And today on the first month without a cancer appoinment, let me just say thank God and fuck yeah.

Public Record

I grew up in a house where there always 15-20 people and poor. There’s the psychodiagnosis you can give me for having always been public. I thought poor was normal since I never really had to see kids with me more and there’s the psycho diagnosis for me not being materialistic but perhaps you can also weigh in on why I’m working so hard and making sure  my daughter is not.

Today I received a call from Kiana’s mother’s  attorney saying that she’s filing a motion to compel me to hand her my medical records. It’s set for December 12^th, 2012 at 1000 Guadalupe Street if you want to watch. For the kid born on 8/8/80, it’s a bit amusing to have it be on 12/12/12. If you’ve read this blog, it’s had sad moments, happy moments, angry moments, scared moments but it hasn’t had dishonest moments. There’s even in here the confession of an affair six years ago before my daughter was born, in the entry how the light gets in if you’re a jerry springer type fan. It’s not the sin that kills you, it’s the cover up. I have no problem with the entirety of my medical records being public record If you read this, you know how much I had in emergency savings, why I’m not touching a 21,000 retirement account even though I don’t expect to make 40 because it would provide a monthly stipend for my daughter until she dies if/when I do. The reason I don’t hand it over to her is because my neuropathologist is Pete Berger from John Hopkins, my neurosurgeon is Dr. Allan Friedman who did Ted Keneddy’s surgery and my two neuro oncogologists are from MD Anderson and Duke. They are by all accounts one of if not the best in their fields and Ms. Leon’s attorney doesn’t have the courtesy to give me the name of her expert and if there’s anything I’ve learned from the medical field, that like any fields, there are a huge range of opinions even among the brightest, perhaps most among the brightest. This doctor has thought maybe my memory issues could be helped by this, others by that. I think part of the reason these brilliant doctors took my case was because of the Livestrong connection but I also think part of it was because it’s an incredibly unusual case. So do I think Ms. Leon’s attorney could find some less than qualified expert to try to make the argument that the fact I am more at risk for seizures than most human beings because of cancer, a hole and scar tissues, yes I do. Can I afford my doctors to come to court and testify? No, I can’t.

I have tried to be reasonable. I have offered Kiana’s mother long before any of this the chance to sit with my medical records with me there and then hand them back. She passed that opportunity up and said it doesn’t matter if I look at them, I’m not a doctor. I have offered her attorney the opportunity to do so with the doctor of her choice and if there’s something there that they don’t like to then seek the order. They passed that up. I have offered a letter from both of my neuro oncologists once a year stating that I’m stable if I am and that I would let them know within a few days if I ever had to be hospitalized as long as that in exchange for those things they would never use my medical condition as a reason for seeking custody. They passed that up. I will make these invitations again in a public forum court and take my chances in court that a judge can see that I would have some hesitation over handing this to someone who had an affair with the guy who was offering his parents house for a place to stay. That circumstance makes it hard to rebuild trust. But I will repeat all those offers in front a of a judge and trust the judicial system.

Her boyfriend is suing me for his broken mirror after the city of Austin dismissed his trying to get an assault charge for me removing him off my property. Any documents referred to here that are public documents, you let me know whoever you are reading this and I’ll email them to you. Any medical records, you come to my  house, I’ll make you lunch and let you read them. In fact I intend to take a summary of them to court and if they are ordered to hand them over and ask for a psychological from her mother since I’ll be handing 3 of mine, 2 before the divorce and 1 after.

Mothers usually get custody in custody fights. People usually die of this cancer. Let’s just say that on this day while I’m angry and sad and confused, cancer and it’s side effects picked the wrong guy to have a fight with. Let’s make that public record.

Pile of Good Things

Well, Thanksgiving weekend was interesting. The turkey trot win was awesome and there’s no trophy I’m more proud of. But it just kept flowing well. I had a few very kind Thanksgiving invitations but the one I took was the one to what was labeled as an orphan Thanksgiving where people who didn’t have any family in town got together. Other than the Cowboys losing to the Redskins, it was a great event. A lot of good people who were also good runners but  its this time of year I remembered why I don’t gain weight during the holidays (or at least not too much)

Saturday though was an interesting day. I ran 20 miles for the first time since before Boston and remembered why I don’t  train for marathons year round. But a friend of mine who does an annual charity beer mile. Chug a beer, run a quarter lap, and repeat. I’d never done anything like that and one of my friends asked where Kiana was. She happened to be with her mother but the friend wisely pointed out that probably that was not the best thing to take a kid to when there was a custody hearing pending. Still, turns out the guy who almost never drinks can chug a beer and I won it with a time of 6:40 in another exciting toe to toe finish. The turkey trot is an infinitely more significant race but it was nice to have two trophies within the same week, something that’s never happened before. Only the winners got bibs and appropriately enough the male winner bib was #8.

I rented a couple of movies to cover some of the silence and one that has sat on my counter for over a month 50/50 and has been mentioned in here multiple times didn’t and still hasn’t gotten watched. Someone pointed out that the fear of watching it may be a bigger deal than actually watching it, like the anticipation of jumping off something when you have a fear of heights is probably greater than actually doing it. I think we have a term for that, it’s called PTSD and yes the anticipation usually is worse but I also have a fear of heights and small spaces. I’ve managed to conquer those having skydived, becoming a scuba diver who on his first dive was the one who ran out of air the fastest the first dive and then later down the road always the last one because of these lungs that let me run… but I’m not sure I’ll get to this one.

One thing the guy who only watches movies once did do was buy his first ever downloaded TV episode. It’s from the British show, Doctor Who called the doctor and Vincent. They travel back in time to help Van Gogh from a ghost that shows up in his window. I loved Van Gogh long before this, a painting of his is in my daughter’s room, in high school while working at a stained glass factory I made a carved ear as a nod to him. But in this episode, which came out long before any of this started, Van Gogh has kind of a high emotional moment where he thinks that it changes everything, that he’ll do so much more, one of those hopeless romantic moments where it’s more romantic than hopeless. But when the time travelers get back to the future, all they’ve managed to do is remove a small ghost from his window and his mental illness  still commits suicide at age 37 after having completed some of his best works. I am no Van Gogh but I wonder if some part of us rhymes, that an illness in our own head is used to be as positive as it can, his therapy being painting and mine being running. To use some of those demons and through naïve idealism and hope turn it into something positive for as long as possible.

The time traveler says to his companion as she cries about the fact that they didn’t change anything: "The way I see it, every life is a pile of good things and bad things. Hey, the good things don’t always soften the bad things. But, vice versa, the bad things don’t necessarily spoil the good things or make them unimportant. And we definitely added to his pile of good things.

There have been many, many good people along this path. There have been a couple of girls who turned on some of those other raw emotions that we make movies, songs and books about. And for a few moments I think they change everything and Vincent thinks during those moments that they can have kids by the dozen… but of course they don’t. I’ve worked off the assumption of what the original prognosis was that I’m likely not going to make 40. I try to hold onto hope and naïve idealism, poring over the articles that friends have sent me about how exercise is good for the brain(http://vitals.nbcnews.com/_news/2012/11/26/15460602-this-is-your-brain-on-exercise?lite), how athletes have a higher rate of survival in cancer, how a programmer with a similar diagnosis has made it an open source thing (http://www.cnn.com/2012/11/25/opinion/iaconesi-cure-open-source/index.html?fb_action_ids=10151323133942090&fb_action_types=og.recommends&fb_source=timeline_og&action_object_map=%7B%2210151323133942090%22%3A170620113061655%7D&action_type_map=%7B%2210151323133942090%22%3A%22og.recommends%22%7D&action_ref_map=[])...

The new neuro oncologist, Dr. Valiant, has compiled all records and at the end of the day thinks that what appeared as good news may have to do with more imaging issues and biopsy issues but that yeah I still have cancer.

Kiana above all but people in general is why I keep going. But these girls, these moments were everything seems all right keep part of the hopeless romantic alive. But then I remember my great grandmother dying and not remembering any of us and I don’t think I have what it takes to ask anyone to sit through that who wasn’t signed up beforehand to get that close if this ever gets ugly… When I made momentary romantic connections, I sleep better, I remember better, my lumosity scores go up. Trying to dismiss the romance of it, I remember that the damaged parts of my brain are the memory center and the hippocampus, both of which in all people work better when they are engaged in romantic type feelings, trying to dismiss the magic as science but science has never quite explained how we turn that on anyway. And these girls… without exception… somehow stick immediately when so many, so many people don’t in this facial recognition game (the rest I study on things like facebook or pictures, to give you an idea, it took 4 days for Kiana’s kindergarten teacher).

Some call this justification for my George Clooney lifestyle and judge me as less than wholesome accordingly. A handful of people have understood. Some have tried to say you don’t know that you’re going to be part of the minority that beats this, just be willing to go for it, something that I’ve considered more in this month, the first time I don’t have any brain cancer appointments in 2 years but I am nowhere near shaking the PTSD… Plus there is still this court cased based on this. It’s frustrating at some level to have so much of your life being in other people’s hands, literally and figuratively.

So every once in a while, I chug beers and win a race despite the fact that I have an alcohol limit. This weekend after running 10 miles I had a cup of coffee at Central Market despite the fact that I am supposed to have no caffeine. None of these will ever become habit but every once in a while, it’s good to be human and have cancer be less relevant. And all of that definitely adds to my pile of good things.

Thankful Secret

Two years ago, I got out of the hospital November 11^th, had to take steroids for 10 days, anti infection stuff, 2 anti seizure medication, though I never did take the anti pain stuff. Those first few runs were tough… nowhere near the pace I could have kept before the biopsy… and certainly a joke compared to what I’m doing now. I am amused at the accolades I get from therunning achievements since it all started. Running is my primary therapy, or at least the one I attend most often and if someone walked into a party and said I did really well at therapy… well most people would feel awkward. But somehow, sports therapy is I suppose a more socially acceptable way of hoping and coping.

Still, the first race I had after the biopsy was the turkey trot where I kept a 6:16 pace (official results show a 5:39 pace which is just wrong because the leader took a wrong turn and everyone followed so we did closer to 4.5 miles than the 5 it was supposed to be) and I came in 83 over all out of 20K+ runners. It was the first run I’d felt decent at and somehow that was comforting. The next year of the turkey trot was the first time I ever did a race doing a stroller (still now I’ve done less than a handful) and it happened to have the stroller division in which I came in second by almost 2 minutes about a 6:30 pace. I’ve made enough running friends to where many of them announce the time they are going for but some concede secretly hope it’s better. I usually announce the one I’m actually going for, no less no more. But for this year’s turkey trot, when people asked how I wanted to do, I said I was hoping to place in the stroller division and keep about a 6:20 ish pace… The weather was looking rough, Kiana’s gained some weight (as kids should!) and the course this year had some hills but in my heart of hearts…. I wanted in order of importance a faster pace than I had kept 2 years ago, showing that cancer had made me aware I was stronger carrying Kiana than I had been trying to just be an athlete by myself. At a 5k where I had this summer come in near the front pushing a stroller, someone had said to me, man you gotta leave that stroller behind and see what you’re capable of without it. I smiled but remembered an old preacher friend who when his wife was ill sat by her side for years even when in the end she didn’t remember him from Alzheimer. Another preacher friend told him he had a responsibility to the people and to the Lord to get back to doing his work… the guy said no and he took care of her as best as he could until the end. This is a very different scenario but what I think is the strongest theme of this story is that I’ve tried to protect my family from this disease as best as I can. I had some growing up to do when it all started and thought it was just about making sure it didn’t drain their finances but it’s a far more complicated issue than that and through guidance from multiple organizations, Livestrong being chief among them, and multiple great people, I’ve learned to take care of the many, many different aspects, the emotional moments and connections, the memories the things that make us human being most important of all. 

I have a new GPS watch now than the one I was using 2 years ago. Back then, it was one that kept track of your current pace and I’d just check in on it every once in a while but it only  let me know how things were at that point in time and every mile letting me know how that mile goes. The watch I have now I have set to tell me an average pace, realizing that while every moment matters, it’s the trend of your races that clue you in more to reality than just a slice of life. At the halfway mark, that watch said I was keeping an average pace of 6:19.

The race ended with me passing a professional triathlete, pushing a far more expensive stroller with a less than 1 year old with less than a half mile to go. He tried to run right next to me for a bit and frankly I was nervous because I knew who he was. The crowd must have been amused to see two strollers racing hard against each other because they immediately reacted and started cheering. That was the most I’ve ever gotten cheered on at the end of a race where two strollers in a five mile race ended up less than a few seconds apart, something one staff said they had never seen happen. 

Kiana and I had run the kids K together right before it and it was a beautiful to watch her enthusiasm. Then she was kind enough to let me carry her for a few miles while listening to Disney songs on a loud speaker, alternating between singing along and heckling me to go faster, faster. Two years later, I kept a 6:11 pace, 71^st overall and won the stroller division. Thus exceeding my open goal, beating my secret goal and achieving my hope. 

 

As this custody hearing approaches on January 15^th, where someone who didn’t stay through the medical appointments is now suggesting that my medical condition should only allow me to have supervised visits, one of the people who wrote a letter on my behalf stated that running has become the analogy of my life. I joke with people that if you’re ever going to have brain surgery, don’t put it off to run a marathon because that’s a hard story to keep up. Put it off to you know eat cheesecake or something. But if  running is the track that fits my life, I’d rather slow down to push Kiana or to run next to her until the day where biology rules that I can’t keep up with her rather than ever be faster without her. I am one week away from the first month in 2 years without a brain cancer related appointment and I’m starting to believe it may just happen.  And for all that… for all that I am nothing but grateful and that’s no secret.

Fire Not To Yield

Kiana’s mother’s attorney emailed and called me last Friday… Obviously it would be less than intelligent to take shots at her in a blog but let’s simply state that Saturday I had a 17 mile run… and it was the best training run I’ve ever done. It was fueled by that fire and I kept a 7:15 pace. The next day I ran a trail run for the first life in my life. Somehow, if I manage to hit my marathon goals, this may be what's next in running, it's less pretty, more raw and somehow more fun. They fueled those run by wanting me to hand my medical records to have an expert review them to testify to the court that I am not fit to parent. My neuropathologist is from John Hopkins, I have neuro oncologists from Md Anderson and Duke, and my neurosurgeon did Ted Keneddy’s surgery. And each of these guys are world famous. There are far more world quality doctors that are part of the team but even then as described here they haven’t seen eye to eye with each other on all this process. But with all of them there are always 2 questions, am I still fit to raise a kid and can I keep running? Because one is why I get through the day and the other is how I do it. And not one doctor has suggested that I should stop doing either. A cursory reading of this blog shows I don't hide my medical problems but there is a reason federal law protects you from handing this stuff over because having those things in public records. I am "retired" from now but if we're still beating the odds in due time when Kiana is ready for less time with her dad and depending on the state of medical things then, who knows what's' coming. I sat with the department of rehabilitative services and we talked about some places where I can keep volunteering but I said that right now, I have the privilige of spending tons of time with my daughter at an age where she loves it. So I volunteered at her book fair yesterday and volunteering with marathon kids the next two weeks. These were literally not the kind of jobs you go to college for but even then I accepted the restriction of not getting up on a ladder for one of them.

The city of Austin sent a formal letter saying there was nothing there to let her boyfriend file charges against me because he refused to attend mediation. And then yesterday, I received a call setting up a time to meet up and receive a summons because he’s suing me for about $300… I gotta tell you that lawsuit even as broke as I am, I can’t imagine me losing but that’s a bleep in the radar. The custody thing of course is gigantic… If for nothing else that after I paid Kiana’s mother $30 to come and share Halloween with us and she agreed to have Kiana do the turkey trot with me, she’s spent time left and right trying to get out of that, trying to say it’s inconvenient for her to pick Kiana up. Sheesh, call this raw, not pretty, not nice but if I had to sign up for more cancer appointments to deal with that kind of stuff less or vice versa, I’d take the cancer appointments. But with that said we’re 21 days into the first month that I may not have any in 2 years which while I imagine if I actually get through the month, I’ll say it more politely on facebook, the feeling I’ll have if we get to the 30^th will be fuck yeah.

But I’m going to keep going… because the one thing I will never learn is to quit while there’s a chance. I am helping out with Movember, even getting friends to put on temporary tattoos for a dinner party. I am still training for a marathon and I still kiss that little girl every morning and every night and help with some homework and plenty of things in between. And assuming she is there at the turkey trot tomorrow and the agreement is respected, I hope to be able to get a better time with her a little heavier (kids gain weight!) because I think we’ve gotten stronger together.

I went to see the latest bond movie recently (yes this is my endorsement) and in it, it wasn’t so much about the fancy technology but just a raw story about dealing with a sort of life after death. (With that said, I am not sure why I took the George Clooney lifestyle, I should have gone for the Bond girls one). But in it, there is a poem quoting Tennison

Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

Tomorrow is thanksgiving and I am thankful. For all that’s come.

Hope Less, Roam and Tick

The guy whose heartbreaking, brain related break up is literally on you tube still wonders whether or not to do these things alone. My cousin, now that I’m retired, has agreed to live with me indefinitely both rent free which I’m sure is helpful to her and because her and Kiana adore each other and if nothing else I can show the court when the time comes that I’ve never been trying to do this by myself.

Still, halfway though this Movember (I look horrible with a mustache) I am starting to absorb a little bit more that maybe, just maybe I do get to beat this? Or at least it’s not as consuming as it has been. If everything holds, this would be the first month since this all started that I don’t have some brain cancer related appointment. I’ve been delaying dealing with a tooth forever and ever partly out of being broke, partly out of the fact that I’ve frankly been working off the assumption that with this little time left, what’s the point of fixing teeth (with dentists obviously taking the right approach that they want you to have all your teeth in your old age but if you’re not going to make old age….). Ironically, appropriately, the day before the dental appointment while fixing a flat tire I broke a tooth and so then I had to get 2 teeth fixed and Kiana lost her first tooth. So I spent a couple of hours getting a tooth drilled yesterday and said, less than politely, to the receptionist that compared to some other medical bills uninsured dental bills were a joke. Perhaps showing me not to say things like that, it turned out I’d neglected it too long and a root canal will be necessary, more digging out of my head. It’s amusing that after all these appointments and MRI’s somehow a dental one and a dental xray don’t even count to me. Still, I biked 20 miles to and from the appointment. It’s funny how what I think will eventually kill me is what’s gotten to me in the best shape of my life.
 

Still, it’s been some lovely days. I haven’t accepted loss. I sat with a meeting with the department of rehabilitative services where as they look at my neuropsychological and my physical restrictions (ie shouldn’t work on a job where a seizure could make an effect thus no rooftops etc etc) and we’re taking a long term strategy. One of them actually asked if I would volunteer as a mentor for the type of kids I used to work with and we’re discussing whether or not it’s realistic with a driving restriction…

But I volunteered at Kiana’s school function on Tuesday and will be volunteering in her library. I went to a happy hour to celebrate the people who I had coached to their first marathon who got horrible weather and I got a couple of them to sign up for the Austin marathon. I still do lumosity most days and trying to actively distract myself while doing it, something that I’ve met with limited success but I still want to believe that somehow will power can get some of this back. I gave up on the ADHD medication because 1) they weren’t helping at all 2) I got incredibly dizzy. It’s intriguing to me that the long term insurance was approved without appeal but that some medical things like neuropsychological rehab were never approved and others things took a while. I am now uninsured so I guess I don’t have to have those arguments. And while if I actually get through all of November(movember) without a neurological appointment, there better be some form of celebration on December 1^st… what do you do if it comes back? I want to believe that unlike my doctors think that I am invincible, often joking with my friends that I only have these health issues to pretend like I’m human every once in a while but in the end right now I’m spending more time with my daughter than I ever have. If that’s the cost of this disease even if it kills me early… I’m wondering if we didn’t get the whole of the human approach wrong, where we bust our ass to provide for our kids and then retire when they are doing the same so we can spend time with our grandkids. I understand and certainly focused on that being my job of parenthood but right now I get to have moments like this morning where I had to get a girl smiling because she was not happy that I wouldn’t let her go back to sleep to finish her dream. Is this the cost of my disease, less money, less trips but more time with my daughter at this age even if I’m dead in a few years? Isn’t that well worth the cost?

A perspective I have now I would have never bet on. I’m disappointed in the second best 5k in my life… disappointed I didn’t get to help much with a tournament I’d help grow for several years but when my daughter carves “I love you daddy” into the wall, well, I frame it. 

I am also working with a committee with Livestrong starting yesterday that will work with more young adults. For obvious reasons, old folks and children with cancer get more attention than the age that Lance Armstrong and I and people our age got it at. All I have to say about the Lance Armstrong news thing is, I never cared about his athletic achievements, but am incredibly grateful for everything that organization has done. So the guy whose planned events… is now trying to pay forward some things, making notes about this person’s scar or that person’s tattoo in case some of the face name recognition stuff fails…

Still, the guy who clearly mishandled a diagnosis in regards to his relationship, has had a playlist on his itunes for a while called hopeless romantic. In simple frankness, I’ve added more songs in there in the last month than the last year combined, perhaps being open to some realities. There is an incredible range of songs some quoted in here like waiting for an angel and the latest edition is a song that, pun intended, really struck a chord with me http://www.youtube.com/watch?v=iEr9gMYdkHI) head full of doubt, road full of promises. And the movie that people have been trying to get me to watch forever 50/50, I finally got the courage to borrow a couple of weeks ago but still haven’t put it in the DVD player… It still feels like too much to ask anyone and perhaps more than I am willing to gamble on the table. So I wonder if I am more hopeless or more romantic? Or as this entry is entitled, whether I should just hope less and be grateful that I get to still roam through running and biking and be grateful that the heart is still ticking…

Someone asked don’t you want to just cuddle, , wouldn't that make life easier… … and one of the songs on that playlist is in the arms of a woman (http://www.youtube.com/watch?v=Th4SwSpaRWU). I don’t know but while that songs that I might be more at ease in the arms I still, even in a month without medical appointments am afraid of the ghosts in my mind or to quote that song…

Now most days I spend like a child
Who's afraid of ghosts in the night
I know there ain't nothing out there
But I'm still afraid to turn on the light

So I’m not sure the part of the brain that allows romance still works… But I’m still trying to keep hoping, roaming and ticking. 

Useless Breath

So my retirement officially kicks in December 25^th, well not actually then but the nearest business day to that. Christmas of all days. This has been a strange week psychologically, like much of this journey with some high ups and high downs. When the letter came in both doctors and friends said congratulations… I am not quite sure I understood that. There is an New York Hispanic musical called in the heights with two songs that I’ve kept listening to trying to balance my emotions between them… one is a girl singing a song called Breathe (http://www.youtube.com/watch?v=Fyu6JotBO8M) about a girl who is struggling with what she’s doing with being the first in her family to go to college, a song that was on the playlist for that 10 mile run that I kept at a sub six pace and is on this week’s 5k race playlist. The other is a song called inutil, useless about a father struggling with providing for his family (http://www.youtube.com/watch?v=ttAGLq13JJo):

I will not be the reason
That my family can't succeed
I will do what it takes,
They'll have everything they need
Or all my work, all my life
Everything I've sacrificed will
Have been useless.

Ironically while the $2000 a month paycheck from the insurance, a guy whose never been that materialistic will be just fine with that, it still feels like losing. And ironically it was the week I’ve spent the least amount of time sitting around home for a while. Monday I was at Kiana’s school, Tuesdays I spent 14 hours working the polls at the election. That was a great day where the clerks and judges loved me and I met people and interestingly enough some of them knew me from the posters and one neurologist asked if I had a craniotomy… and then I had to deflect the conversation when she asked what I thought about Obama care. 

I chipped a tooth this week as well. I wish I could tell you a great story but I was fixing a flat tire and in frustration while having a part of the pump in my mouth bit too hard. I went to a dentist the next day and perhaps in hopes and awareness that there may not be a medical appointment this entire month… I signed up to finally have a tooth fixed that’s been a problem for a while. It was a friend’s recommendation and it as 20 miles there and back, the dentist said he thought it was cool that I was still exercising and while it was the first time we met, I acknowledged that I am sure I could use an app for the bus or get a ride but that it was a way to still feel like I could beat some of the side effects of all this, somehow not just succumb.

I had lunch with Kiana this week 3 times and was the mystery reader at her school today. It was about a half hour reading where I read Dr. Seuss books like Horton Hatches the Elephant. The book there is about an elephant hatching an egg when his mother leaves unexpectedly. Obviously the parallel isn’t great but it felt like what this custody battle is like. Kiana loved having me there and while I’d love to tell you that I always read that well, I practiced quite a bit to try to keep a bunch of 5 year old’s attention. I’ve done public speaking since I was 12 years old and I’m pretty damn proud that was the most captive audience I’ve ever had (though I didn’t say damn in front of them). 

There are obviously places I still feel useless… this weekend is Celebracion, the biggest tournament Austin has ever had and that I had run for several years and the first I ever played. This year will be the first time I miss it but I want to stick with my commitment that Kiana comes first and I couldn’t get her mom to trade weekends and unlike a race, this is an all weekend commitment. This was the tournament I played a few days after getting out of the hospital, the only time I’ve ever won it though in simple frankness I didn’t play much fresh on some new meds. This year, the first year that I did not attend the national ultimate championships in half a decade was the best results all the teams I’ve ever had with doublewide bringing home the first national title. I didn’t even get to watch it though it was streamed live because I was at a Halloween function with Kiana (you better believe I watched it after) but I am helping plan the party celebrating it all in a couple of weeks. 

I continued to work with the Department of Assistive and Rehabilitative Services who are confounded as to quite how describe some of disabilities if and when I get back to work. They said it was “obvious you had confidence” but how you describe things like your problems is difficult… they appreciated the fact that I was volunteering places but this 3 in a million tumor with odd side effects kept being one big question mark. The restrictions got them to where they were frustrated to talk to me about not being able to be on a ladder or outside… the guy who put off brain cancer surgery to run a marathon, who bikes all over town being told he shouldn’t work outside because of liabilities, the ones I waive for athletic events… life is strange. 

Kiana and I started our Holiday cards this week (if you read this and I don’t have your address, send it to me!). Last year we had more than we ever had and this year it’s even more. I wish I could guarantee everyone I send one to a gigantic gift or the entry to heaven but if nothing else, I get to say thank you in a subtle way. Ironically, oddly, the top, bottom and center pictures of all of those have been on posters, papers or fundraising emails for various reasons. I acknowledged some of the weaknesses to people who helped me with the cards from Livestrong to get it to the staff, all of whom are wonderful but some who have gone above and beyond. Kiana’s daycare direction got descriptions of who I wanted to drop off cards for. Facebook got used a lot to track down this face/name recognition. Kiana filled them all out even drawing flowers on some and she added 3 to the list on her own, my favorite being the lady who helps her cross the street and I should have definitely taken a picture of the envelope. 

Not being employed for a disease is not comforting even if some people say congratulations… and it makes me feel at some level useless but I’ve already signed up to volunteer at Kiana’s school, she didn’t attend daycare this week on any of the days I had her, I’m already signed up for her first school trip in December. I ran 15 miles yesterday at a 7:06 pace all by myself and finished with enough time to go have lunch with Kiana. As I dropped off the cards for the Austin marathon staff, they said it was awesome that I was still running with all that’s happened but I acknowledged as I always have that it’s how I hope and I cope, there are just those who think it makes a good story. If you’d met me 2 years ago, you wouldn’t have heard much about my running but I leave it out there because it’s an area in my life where I literally have not lost a step. One of their staff seeing some of my times tried to give me one they had gotten when they were 46… he said beating that at 46 should be your goal. I told him let me make 46 and we’ll work from there. 

Some of this is exhausting of course. Ironically, I am an extreme extrovert who draws his energy from crowds is now a little more intimidated by them because what if he doesn’t recognize people… I wrapped up an agreement with my previous employer in which we agreed to (non disclosure) and from there I literally biked to my old job where I dropped off some holiday cards quickly and left… even leaving one for an administrator trying to prove what I always said, that it wasn’t personal.

My daughter is in bed (mine as happens far too often) after we did some homework tonight, read some stories, drew somethings and made dinner together. I am never signing custody off until my doctors and/or friends clue me in because I fully believe that I am capable of parenting and running and those are my 2 standard questions at medical appointments. I’ve realized that some of the things I said to her in what I thought as a useful conversation on Halloween were, in my opinion, twisted into legalese and as I’ve said before, it sure helps being divorced when you don’t recognize the person. But Kiana’s teacher let me know at the end that was the most engaged that the kids had been during a parents reading (given enough preparation, I suppose I seemed very spontaneous). In parenting, in that I am useful and for that I’ll keep breathing.

Second Best Legacy

Two years ago, November 5th, 2010 started the brain cancer journey. I’ve kept some great friends, made some new ones, lost a few. Since then, I’ve won some races, some Frisbee tournaments, a soccer league, raised some funds etc etc… Long before any of this started, I’d said things like “No one says on their deathbed… etc and I’d been part of local events for various sports and charities. But though all this, I am intrigued/comforted/fascinated by the fact that without exception what has gotten the most affection and positive attention returning my way is where I’ve come in second best. My second best marathon time would win me the cancer survivor’s division at the Livestrong marathon (http://hawktober.com/tag/iram-leon/), my second best half marathon was pushing a stroller while my mom did her first and it got both local news coverage (http://www.oaoa.com/sports/local/recreational/article_462d74e6-1038-11e2-9b83-001a4bcf6878.html) and a motivational poster made (picture below, though John Bussert, the friend who made it is an army trainer and I’m just waiting to get beat up by the guys who can’t give him excuses anymore).  Even one of the races I won originally, the brainpower 5k, I am far more proud of that the second year we raised more money and I got more people to come and raise money themselves than the first year where I wasn’t quite ready to realize that this tumor and me are well tied together inevitably. Some of the coincidences, the fact that the night the Livestrong Center opened was the day a significant other left, the fact that the first Brain Power 5k was announced on my first birthday after the surgery, the fact that my two best marathon times are the first time they had a cancer division, the fact that the first Imerman’s angel with the same diagnosis signed up shortly after mine… I'd originally tried to dismiss these but Einstein stated you can live life as it nothing is a miracle or as if everything is.

I am bummed out by fact like that I don’t get to help the ultimate community as much as I used to but single fatherhood complicates that and I love that community but if I ever have to choose between getting a few more moments with my child and anything else… that’s an incredibly decision. In regards to running, while I’m doing the same relative schedule, I’ve continued to train harder in effort than I actually ever have, beating some times that I achieved in college and high school. Some friends have even wondered whether the medication I am on helps my performance but the truth is that it actually lowers my peak performance somewhat and I have to take extra to be able to push this hard without risking seizures. But let’s be clear, I wouldn’t be pushing this hard at trying to balance the legacy that apparently my life is tied to in that poster (combining family, cancer and exercise) without that brain surgery. So in that sense, I suppose circumstances even if not the drugs have helped me achieve better performance. I’ve heard a few survivors say that cancer was the best/worst thing that ever happened to them and I can certainly echo much of those feelings but two years in to it, despite the fact that some of my mishandling of the emotions cost me my high school sweetheart, that some of my mishandling admitting some of my memory problems cost me my job and health insurance, I think that, for me at least, it has been far more the best thing than the worst thing, second best thing at least, after the child who I kiss to bed. A custody battle is ensuing over that… where an attorney, I hope not her mother, is trying to make the case that the hole in the middle of my brain makes it unsafe for her to live with me because I have some mental deficits and am far more prone to seizures than most of the human population. Seeing the legal bills and am doing my side without an attorney from now on because I’m not draining the resources left fighting cancer that way. I grew up poor and be beyond sure, I’m not leaving my daughter that way.

Anyone who’s been keeping track of this… knows that I snuck out of a hospital when this started to run 8 miles, put off a surgery to run a marathon, rushed my doctors are both the initial biopsy and the major surgery to let me get back to work as soon as possible… When I was found collapsed on the side of the road, I went to work the next day and ran 15 miles the day after that. Two days ago, my insurance decided that I’m eligible, I get a Sabbatical from work for a while. This was less than easy to accept for a guy whose worked full time since I was 14 and from Mexico, a country where we derive our value in how we provide, what I was most worried about in that initial hospital bed. Now, my toenails get painted, I brush hair, have lunch with her and volunteer at her school. There are not trips to Costa Rica, India, Italy or the cancelled one to Brazil that got replaced by the first trip to Duke. I may not get to go all over the world as I did before all this but we walk to school every day and she asks for me to tuck her in and carry her and those trips are infinitely more valuable.  I can live without work though I assure you that's tough but if this custody requests goes through where I am only allowed supervised visits where I become a guest in my daughter's life s... that somehow will feel like I've gained my soul while losing my whole world.

Kiana and I are also currently on the poster for the upcoming turkey trot, the only race I’ve ever done with a stroller division. That picture was one captured shortly after we got handed the 2nd place trophy, keeping that second best theme pattern. It was on last year’s Christmas card and this year it’s on a facebook billboard. People joke about how I am everyone’s poster child and that it’s cool but if anyone thinks all of this doesn’t feel strange… let’s just say that if anyone wants to trade lives, just tell me where the dotted line is (trading the kid, well that one’s not negotiable).

There are some things that are far more in the black than they were two years ago, others that are far more white, some that are far more in the red but none quiet yet that are in 50 shades of gray… The one thing that is beyond clear as Thanksgiving approaches is that I am incredibly more grateful for many aspects of life. Ward wrote that “feeling gratitude and not expressing it is like wrapping a present and not giving it” so to all of you who are taking time to read this (and even those who don’t who have helped) Thank you. Some say that the second anniversary is cotton but Kiana and I sticking to a paper gift and getting our holiday cards ready… and while I am grateful for each of you who read this but I may not have your address so if you’re reading this, send that to me. Two down, here’s hoping there are dozens more to celebrate. We had a party called Life Part II and while there are still some odd elements a long way from being settled and perhaps never will be, this may be the second part of my life but I still believe it’s the best. 

All Hallow's Eve

During the divorce Kiana’s mother and I agreed to have a biannual parental meeting. This was suggested by a friend that because our communication was so poor we’d have to sit and talk everyonce in a while. That meeting was yesterday. It was not all pleasant nor polite nor pretty. She at some level wanted me to apologize for having pushed her boyfriend; I did not but even as I thought about the fact that there’s a reason Dante saved the lowest level of hell for those who betray their friends, I acknowledged that she seems happier with this new guy. She wanted me to pay for his mirror and I said I’d deal with him and the DA with that. But while I’d much rather have a boxing match with the guy, I said that we should sit through counseling, get better at coparenting and when we did that, that perhaps he should be included. This was derived from the fact that I have a friend who is divorced from his ex and while she has no legal rights to his children they have found some middle ground about still letting the kids see each other. Let’s be clear, if my exwife died tomorrow, it would probably not happen that this person would ever see my daughter again but in the end if I am here in a few years and they’ve become close, there comes a point where you can’t live in the past. I even threw out a proposal about amending some things from the divorce decree to where it’s not fought out in court but I certainly stated that losing custody of my daughter while my friends and doctors thought it was safe for her to be with me… well that wasn’t happening without a fight and that simply put that was the reason I was fighting. My doctors and friends all know that if that day comes, I’m done with medical treatment. These many medical appointments are exhausting and while I have total respect for those who fight to just keep breathing…. You’re not reading this blog if you think I’ve ever been one of them.

There’s some reality to the pain that existed in that situation as I apologized far more in person than I ever have about the stuff I declared in the Livestrong video, acknowledging that having gone through tours of California and Texas that perhaps I should have skipped those or worked harder at taking her. There were some emotional moments for sure. She wanted to know more about my medical issues and daring to dream that this was a good step and hoping that this won’t be something used against me in court in the future, I told her about the face/name recognition issues, about things the memory deficits, even about the ADHD medication where the guy who doesn’t like to take drugs was trying to get everything back and finally accepting that some stuff is not coming back. I described in detail the reason I was on a driving restriction and that if these incidents happen again I may never be allowed to drive.

Kiana had been asking her mother to be there for Halloween and I’d extended formal invitations and in this meeting we achieved a point, a baby step which to me is not much like Neil Armstrong’s declaration, that it’s a small step but a giant leap. Kiana’s mother came over and went trick or treating for us and agreed that in exchange she would let Kiana and I run the turkey trot on Thanksgiving morning together since we are also somehow the poster children (http://www.facebook.com/ThunderCloudSubsTurkeyTrot?fref=ts) for that. Trick or treating went fine. Kiana was thrilled to have both parents at one event, the 3^rd time we’ve pulled it off (2 school events) but the first time it was ever just us agreeing to it.

Speaking of poster children… I ran a race on Sunday and came in at a sub six pace for 10 miles. That’s faster than I’ve ever done a 10k. Turns out that letting all out running well… is healthy and gets you put on a couple of posters (unpaid but when your kids cute hey?). It also turns out that I’ve now been asked to be on a local sporting goods team. Another unpaid thing but like some of the stuff I’ve done with Livestrong, they provide me free gear and I get to meet good people. A friend joked usually when you get sponsored you get put on posters, not the other way around but I’ll take it.

I am a few days away from the 2 year anniversary of this starting. This weekend if the first weekend I don’t’ have a race or sporting event since like mid August so I don’t quite know what to do with myself. I’ve joked I should get a date. But today as I sat across from the mother of my child, I apologized for all the things I mishandled between the diagnosis and the divorce because I was so afraid of dying and leaving them inadequately provided for… And I said I hope it meant something that the very last thing I did before surgery was kick my mom and brothers out of the room to be with her… I even told her about the counseling I'd sat with Livestrong about how the two girls I'd gone on a couple of dates with I cut it off with both of them within 48 hours when the MRI went poorly and the other when I was found collapsed on the road. I was too late at that surgery moment to keep her connected I suppose but even if all that apology achieved was to get her to have some fun trick or treating with both her daughter and I on this All Hallow’s Eve, (apologies to all anti-Halloween fans), that has a sacredness to it.