Thursday, December 20, 2012

I'll Help You Cry

Larnell Harris has a song that came on randomly as I looked for another recently, called I’ll help you cry. A small group that meets at my daughter’s school came over recently to give Kiana some Christmas presents, and some new plates (we’d learned to live with a hodge podge of them). I sat there overjoyed to see Kiana bounce with joy but also shortly after they left and after I put her to bed, I did the same thing I’ve done every time everyone’s helped through this, I cried like most of the times disappointed I couldn’t do it all alone. Sitting here working with Livestrong with people who had small children and whose prognosis like mine sometimes feels like there’s more question marks than exclamation points, who have taken time off or taken these type of insurance items to get more time with their kids, they are few of the people who get it .

The group asked in the end if there was anything they could pray for and I prayed that the pattern of having less medical appointments holds, that I don’t get found collapsed again. I don’t know them well so I thought it might be too much to let them in on the whole custody challenge that’s going on. I joked with them that they pray that I can turn Kiana to Catholicism just so she becomes a nun.  The next day I sat with their leader as we found a bed they arranged for someone to Kiana, she finally outgrew the one in the Livestrong video and so now moved up to a twin size bed. She hasn’t seen it yet but I hope she gets excited on the growing up steps of life.

Today was her first performance at school with Kindegarten singing some Christmas music and they asked us parents to sit in the back but that there would be plenty of chances to take pictures afterwards. Reflecting the recent incident at Connecticut the principal said hug them as much as you want after and can and she broke down crying herself, clearly recognizing that none of life should be taken granted even without a disease. I was proud of Kiana’s mom that unlike the first day of kindergarten and mother’s day weekend, she was there, taking pictures and video. I sat back as best as I could and after she left I hung out and suffice it to say, I was the last parent to leave. I am going to have lunch with her today, something I do often, though I do try to limit it so she gets some social time, that unique reality of being an only child, something I can’t really relate to. Then she’s gone for a few days, the first time I’ll not share a Christmas day with her so we opened the presents from the group (and me) today and well, somehow she didn’t seem to mind opening them early.

Waiting for an angel is still the most listened song in my itunes but this week I’ve been listening to I’ll help you cry. Those have been the good people in this journey… the lyrics to that song are somehow comforting… the ulti crowd that watched me cry as they handed me a check to help with the medical bills, Todd, the executor of my will who watched me cry over a brownie when I finally decided to get this surgery. What I talked to him the most about that night was making sure that  Kiana and her mother were provided for, the minister who watched me cry as I got fired for not having the memory I once did. I had talked to some coworkers and I started acknowledging to more people the deficits that I’d acknowledged to Todd, my Stephen ministries counselor, doctors and a few friends and then they finally started coming out in this blog. This county retirement thing takes care of that now, a semi life insurance. This long term insurance, which finally is about to get started after the waiting period December 25th, will pay the bills (I keep calling it retirement and my neighbor gave me a hard time about it saying look you’re someone with medical issues not actually retired, clearly not absorbing that this is how I’ve learned to accept it). Somehow calling it retirement when you are doubting you will make forty makes breathing easier. Kiana had her first eye appointment and her eyes are uneven with one having great vision and the other one not having so great so she’s going to wear an eyepatch during the holidays because the doc thinks that the brain has learned to shut off the other eye so the glasses won’t help until she learns to focus on something while blinding the things that were relatively healthy… She’s excited about being a pirate and I’m grateful that this while thing has made me focus on some things I was blind to.

I am a proud stubborn man and anyone who thinks it doesn’t break some of your pride to go to a workout and beat everyone there or go to a race, get a trophy and then go hey can someone give me a ride to and from home doesn’t get it. The custody thing will be settled in due time and I hope a judge will see that while there are some issues, I’ve done all I can to both protect my daughter from this, make her aware and spend time with her and doesn’t remove that from me.

But I cried that night when gifts for Kiana were left here…  and fortunately there was someone who came over that night from my running group that night who has been giving me rides a few times. She gave me rides to some recent parties and we’ve ran a few times together. And she just hugged me as I cried from pride of having someone else who barely knew us give Kiana presents. My friends hug somehow made me cry more. I am not ready to dive into having my first girlfriend since high school but man that moment of connection made me think about it. A friend gave me a hard time this week about how I’ve had lots of girlfriends, which I haven’t. There have been some fun times with nice girls but then the MRI went bad or I woke up in an ambulance or there were medical appointments and then it was time to acknowledge that “we’re better off as friends”. I’ve been hanging out with this girl really in the last two months without any appointments and self-aware enough I said look they start again in January and then I’m probably back up to putting my walls to protect me and everyone else from this and I’ll hang out with you less. She blew me off and put the appointment on with my neuro oncologist on her calendar. Gets you thinking…

Larnell Harris song appropriately got made into a video with images from this horrible incident of kindergartners getting shot ) I can’t imagine what it must be like to be their parents. We’re supposed to be buried by our children not the other way around and there is nothing more senseless than the death of a child. I’ve helped out now with the cancer communities some which has gotten me to talk to people and when you’re in the cancer and emotions class, people think you’re going to be decent at it. By the grace of the universe, most times I’ve just had to listen, a few times hug someone who was crying. And yet when I’ve cried I’ve tried to do it alone most of the time because like those gifts to Kiana vs me volunteering at places, the latter helps and the other one is tough. Jesus was right that it’s better to give than to receive but I imagine most of us have an easier time with giving than receiving as well.

Larnell sings the following lyrics

I used to think that heartaches were meant to hide,
That it was a sign of strength
To keep it all up inside,
But I found out that healing began
When I let someone in who said...

I'll help you cry.
Lay your head on my shoulder and I
Won't let you shed your tears alone.
Take my hand - only say the word
And I'll stay right here by your side.
Right by your side!
I have no words to ease the pain...
I don't know how it all will end,
And I'm your friend and
I'll help you cry.

Thanks to those who have helped me with that.

Monday, December 17, 2012

More Defenders

Edward Abbey wrote that the idea of wilderness needs no defends, it only needs more defenders. This has been a wild ride for a couple of years but I am glad for those who have helped me play defense. They helped me play defense sometimes against medical bills, medical problems, sometimes against my over worrying, sometimes against my under worrying, sometimes against my over confidence and other times were my bragging was simply clearly compensating.

A friend, Matt, the same guy who helps me finish marathons helped me find an attorney who is going to help with this case and she’s accomplished more in 3 days than I had in 3 months. And she’s very good. In fact, showing that I don’t feel the need to hide anything, we’ve offered an agreement about medical records which is now in Kiana’s mother’s hands to pass up or turn down.

I continue to volunteer places and that comes with strange thank you’s. I had volunteered in the ultimate community for years and when this all started they helped. Anyone who thinks that my keeping busy disqualifies some of the problems needs to be aware of 2 things 1) I was never good at sitting still and have no understanding of those who are, my least favorite verse in the Bible being be still and know that I am God and 2) when you volunteer, when you do races… well you waive away liability in a way that an employer cannot and should not.  And come this time of year they want to say thank you… and without exception they’ve all gotten blown off about what can they get me for Christmas but they have been successful in getting Kiana things, making me believe in some sort of Santa Claus. But the pride and stubbornness which in the right context is admirable and in the wrong one stupid, has not been broken enough to where I accept help easily.

But with running, I really am serious that I’m not going to keep doing these distances forever. I still believe in the Lion King’s old idea that there’s more to be seen than can ever be seen more to do than can ever be done. So I am hoping to break 3 in Austin and go out on a PR (and dare to dream that I’ll win the cancer survivor division but if I had to choose between the 2 I’d take breaking 3 and then someone else winning that title even faster would be great as it would show survivors keep being stronger). And then I am going to train for 2 5k’s, one in Austin that the money goes to the brain cancer research and then, and if you read this, you better be ready to donate in due time, one back at Duke because at some level it’s silly that I’ve raised money for generic brain cancer research and for Livestrong who connected me there but not for the people themselves who took on the battle. And then I do think, I’ll take a break or move on more to trail running, something a little more wild, a little less structured.

Fittingly enough I am now a sponsored athlete. That doesn’t mean much in any real terms other than that Luke’s locker now will give me gear for one season that I’m supposed to wear for my races but also that they will help with entry into a couple of races and the first one is Bandera, a trail race, a race unlike I’ve never done before. Trying to not go over the top, I had the option of signing up for different distances but took the shortest one, a 25k. I am nervous about the dangers of it being more on rocks and more unpredictable than road races but a quote I heard recently is that even if danger is real, fear is a choice and I want to not ever live by my fears. And interestingly enough I do hesitate in the heat because of that collapse back in march, because my right hand sometimes shakes after a hard workout but in the wild you have to run slower because that’s all the terrain will allow but you’re still going as hard. You have to carry more of your own water, and music is not really as wise as on the road. I did 15 miles with someone on Sunday and realized it’s a whole new game and I liked running in the wild. You get instants where you take in gorgeous scene but because the ground is not as steady, you have to be more careful about watching the near future steps. The analogies to my running habits and life are uncanny.

I went to 8 parties over the last week between Ultimate, the Austin marathon, the group I coached and various friends parties. And there I hugged people and laughed with them and a few even felt the need to point out that I need to leave my Clooney tendencies… At one, as I answered them, I literally cried and said guys how do you ask someone that? I won a marathon trophy and was in an ambulance a few days later when I felt fine an hour before. And I really do work off the assumption that I’m not going to make 40… They asked if I was making that decision for me or for them… and I answered yes on both accounts. It’s a tough balance to decide when a custody lies in the challenge, when it’s drained resources, who to accept help in defense from this disease and its side effect and who to defend it with.

There are those who wrote letters on my behalf for court who stated that I’ve been as careful as I can under the circumstances with a kid, enrolling her in wonders and worries. I stopped running with her for months and then when I started again use an app that posts live on facebook when I do it. I’ve even confessed privately and I guess here on a public blog that if a court finds that I should have only supervised visits (something no one believes is necessary other than apparently Kiana’s mother and her attorney) that while my heart will be broken, and that’s almost certainly the day I give up, but it’s also true at some level I’ll breathe a little easier because as I blogged here in something that’s going to be used in a wonders and worries fund raising email that what the right balance of exposing her and protecting her from my illness is no easy balance.

But life is unpredictable and wild. Running through trails is fun. I’ve done it on actual trails and today I took Kiana to the trail of lights. And as Abbey wrote, this idea that living in the moment, grasping it with all you’ve got because it may be all you’ve got, embracing some of the wildness even if some of the problem has been something that grew wild in your head. That idea, that reality, may need no defense but Christmas is a few days away and the holidays are okay because I am grateful that the wilderness of my life has had some defenders.

Thursday, December 13, 2012

Carry On

I said many many things in that Livestrong video which was highlighted this week on their facebook page… an odd thing when someone points out to you that thousands of people like a picture of you… luckily it’s clearly that my daughter is gorgeous since my ugly face is essentially blocked but over and over I hope that the sentiment that I live and die by is you have to work on the relationships you want to keep… And that right now taking care of my daughter is the most important one…
I did the Decker half marathon the same one that was a couple of weeks after the diagnosis, the one where coincidentally they gave me bib 911 2 years ago and have been kind enough to keep giving it to me since then. It was the most miserable conditions I’ve ever started a race in 72 degrees and 97% humidity but it was somehow comforting to have and see people there from Livestrong, from Austin Fit where I coached, from the original Austin Runners Club, the founder of Hawktober, people from Luke’s locker. I don’t know if I consciously or unconsciously slow down more during those hot days but it was a tough half… with me getting my second best time ever but the first time I ever had the second half of a race be slower than the first. The playlist had the most new songs any list had ever had (usually it’s just one or two) but the two most meaningful ones as I sat there and worried about the hearing that was supposed to occur challenging custody was Carry On ( I meet people who think that somehow keeping going when you’re told you’re dying is admirational… something I don’t honestly quite understand… I guess I think that’s what you’re supposed to do is keep going till the finish line. The song carry on has some great lines at the right moment (called the hill at mile 10 that I can’t believe I paid money to run up)

Though I've never been through hell like that
I've closed enough windows
To know you can never look back

May your past be the sound
Of your feet upon the ground
Carry on

My head is on fire
But my legs are fine
Cause after all they are mine

And I did and I got my second best time, fourth over all and first in my age group but that song played at the right time… It will definitely be on the Austin Marathon playlist
An attorney is helping me with the case through appropriately enough the connection of an ultimate friend, Matt, who has run me into both of the last 2 marathons in case anything went wrong. It is also being helped by a running friend who is helping me as well as he’s a single father. I am not as worried but I am less worried. In the second month without any cancer appointments, I am also not as worried about that. Of course neither worry nor lack of it might change the outcome much… but I hope it does. I keep thinking of  Paul’s statement now remains faith, hope and love but the greatest of these is Love. They are all pretty great.

The school thanked me today about volunteering at their library and reading to kids and seeing Kiana so much. I walked her one block in the cold this morning, the best part of every morning. And the kid who like to be number 8 because he was born on 8/8/80 hopes to someday take her to the wall of china on an 8/8 since it’s my number and since there it’s father’s day.  The biggest birthday party of my life was on 08/08/08 at a Chinese restaurant called 888 which was when the Chinese started their Olympics. I am not superstitious but some part of the hopeless romantic in me wants to believe that somehow means I was born to be Kiana’s dad.

Who knows what’s coming? Since the seizures are the biggest concern, I am meeting with a doctor in regards to that in February. Today, I go to the Austin marathon’s holiday party where they’ve joked about how when I start running their marathon, my bib will be the first number they retire. But until then, my past will be the sound of my feet upon the ground and this morning Kiana said it was too cold so I actually carried her the one block to school. My head may be on fire but my legs are just fine so I’ll keep  carrying on. 

Friday, December 7, 2012

Hand Over Medical Records

My medical records are sitting here at my house. Anyone who ever wants to read them is free to do so.  So that begs the question of what Kiana’s mothers attorney sent me, asking why I won’t hand them over. It’s just  a simple reality that I can’t afford my doctors to come and testify for me and I lack trust that their expert would state things, having worked in the legal system, seeing people use one clause to make a mountain out of a mole hill. Below is our exchange, edited because well court is coming:
Kiana’s mother’s attorney:

 If you have nothing to hide, why are you continuing to refuse to provide your medical records? As I previously told you the records can be given to our expert for review and then we can know where we stand.
My response:

Put me on the stand and I'll answer that in person as specifically or as generally as you want but the short version is Kiana’s mother and her boyfriend are what I would call less than honest.

With that said, why won't you tell me who your expert is? I'll tell you who my doctors are. Dr. Friedman who did Ted Kennedy’s Surgery, another Dr. Friedman who helped supervise the case, Dr. Desjardins, a world class neuro expert and here in Austin, Austin's first ever neuro
oncologist Dr. Brian Valiant, go look them up, who will speak to the stability of my cancer from when he started working with me (8/2012). I believe I handed you that entire thing to read, do you deny that?

But you can't or won't give me a name. Doctors, like in any other profession, have a variety of qualities. And simply put, my diagnosis is rare, a simple google search of diffuse astrocytoma would tell you that there's different approaches so feel free to let a court know why I won't hand opposing counsel who is trying to remove my custody. It's because I don't trust you guys. Subpoena my doctors to court anytime you want as long as you're ready to pay for it. The Duke doctors sent you a letter which we've submitted to the court.

If you wish to have the court have psychologicals of both of us, I am completely game by a court appointed psychologists who can evaluate us independently. I've sat through 3 in the last 2  years, 2 before the divorce and 1 after and I was incredibly blatant and honest in it because much of my life depends on it.

Your client can testify to the court why she didn't pull all the records when she still had full access, why she finalized divorce before a follow up of my long term prognosis had even been done and her boyfriend can testify to the court that he lied to his mother and my mother. These will testify to their character, to me a far more important issues than the fact that yes, if I stop taking my medication, the exact same medication I was on the day of the filing and finalization of the divorce, I will have seizures probably regularly because there is cancer, scar tissue and a hole in the middle of my left temporal lobe, the most electrical part of the brain. But this was true the day she filed for the divorce and the day she left I wasn't cleared to drive or return to work and she left a child with me. She can argue that the night she left there was a locked door and there was but she had her daughter multiple times before she filed for divorce so that argument holds no water, ma'am. And no, no one, would argue that before the divorce anyone other than she had been the primary caretaker of our daughter. That is no longer true. If you want to have her explain that as part of public record, that she ran from her responsibilities and left me at the weakest state of my life, I think those will speak well to character, to me and most judges the most important attribute in raising children. I was left with a child when I wasn't even supposed to be alone. I haven't hidden my disease from the public or my daughter. It's on commercials, a public blog and my daughter has attended MRI's with me, neuro surgeon appointments with me and been enrolled in counseling for wonders and worries for children whose parents diseases. I pray to God that I can protect her from it but I can't control cancer. And you better believe if, IF, the time comes I'll hand custody over then but until then I will fight with every breath I have to spend time with the most precious gift the universe has ever given me.

A cursory reading of my blog or my facebook page would let you know, I am not a private guy but simply put, I don't trust you or your client who don't have the courtesy of providing an expert's name.
In regards to my own health condition, that I will provide you letters from my doctor at least annually and that I will let you know anytime I've been hospitalized immediately and within 72 hours as to why AS LONG as you state that you will not challenge custody while my doctors state that I am stable. No circumstances have changed since the divorce. It will be fairly easy to demonstrate to the court that a guy who sneaks out of the hospital to run 8 miles, who puts off brain surgery to run a marathon doesn't want to accept medical limitations easily which is the way it should be. People should not lay down to die even if they have a terminal illness. But the ones I've accepted over and over and over since the divorce and these letters demonstrate and even when midweek visitation happens are times I didn't use to spend with my daughter. Statistically speaking, I will not likely make 40. But right now, things are ridiculously good and perhaps I'll be part of the minority that beats brain cancer. I am in the second of 2 months for the first time in 2 years without any appointments. It's going to be hard to prove that your emergency request was justified.

However, I have the privilege, the honor that I had good enough insurance, private insurance mind you, that I can take home $2000 a month due to my diagnosis and its side effects and spend more time with a little girl. This is completely worth cancer, even if it kills me early. I don't know where you come from but where I come from, we don't have kids so that other people can raise them. I can count on one hand how many times I've done so for anything but running, which benefits both my emotional and mental health, then it's my responsibility to pay for it.

By the way, I have no clue what Kiana's mother health is, will I be getting regular reports from her doctors?

We are fortunate enough to live in a town where dozens of quality events for children are at a free or low reasonable price. Have any social worker inspect my time with my daughter. She is lacking NOTHING.

Any other questions I can answer ma'am?


Tuesday, December 4, 2012

Here At the Unknown

Oliver Wendell Holmes wrote that if he were dying his last breath would be to have faith and pursue the unknown end. What I miss most about life part I is how much I used to travel. It was (is?) on my list of things to do to get to the 8 wonders of the world (4 were done before this and that 5th one was the trip cancelled to go to where instead I went to Duke). The reason I have only ever purchased two movies, only ever read 2 books twice, generally only visit places one is because there’s a beauty, an excitement about the unknown. I’ve come to embrace this a lot in the last couple of years… this going with the flow approach, rolling with the punches. I’ve even learned to mess with waiters and waitresses when in a new restaurant to just give me whatever they would have with whatever sides (you would be shocked by how much that messes with some of them).
Kiana’s mother’s attorney has not been willing to negotiate any of the points towards this medical thing. To them it appears to be black and white, which let’s be clear cancer, brain damage, epipepsy, the brain itself are complicated thing so it clearly is not. This unknown, the one thrust onto me, I’ve made peace with. Even if statistics hold and I don’t make 40, I promise you I’m okay with. But I’ve tried to keep it from shaking up my family as little as possible as the fact that I will likely not grow old forced me into some new ways of growing up. I’ve tried to make my life as stable for Kiana, staying through the divorce in the same house. It was incredibly charming last night when as I put her to bed, she said you don’t say “My kiss needs a nose and my nose needs a kiss as much as you used to.” This reflecting a habit of ours and perhaps my favorite thing about the fact that that is the picture that made the Livestrong posters have is her kissing my nose.
So next Wednesday we see if a judge orders my medical records. I’ll live with it either way, the main hesitation with that continues to be that attorneys want to find technicalities instead of big pictures to try to get their way. I’ve been warned by some people that went through bad experiences with that. I literally handed my medical records to her attorney to let her read them in my presence and she said well I don’t understand that so I’m still going to ask the court to hand them to some expert, where they wouldn’t have the courtesy of telling me who. Who the expert is matter, that’s why I go to Duke and Austin’s only neuro oncologist is my doctor. There’s a reason neuro specialists of different varieties are the most paid in their fields.
But I have faith in the judicial system, in humanity in general. Throughout this adventure, people have tried to convert me to the faith of theirs, letting me know that if I do that, I’ll have more peace or I’ll be healed. I’ve been invited to be a Mormon, a Jehovas Witness, Muslim, and Buddhist all within the last month. I don’t doubt that people’s faith helps get them through the day and I have my own but one place where I put faith and I believe it’s worked over and over through this process is in people. Some of that has been in the medical process in my own doctors, though at times when my brain doesn’t feel like it works the way it used to I’ve somehow thought my disease was their fault. But the greatest faith has been in friends and family, especially the ones that know how to hang in there all the time and are both willing and able to be there on the hard days. To quote, Bono if I ever lose my faith in them, there’d be nothing left for me to lose.
At the War on Cancer lecture, they were displaying the causes of cancer. The biggest one was smoking. The second, though the lecturer would later acknowledge that he sort of “cheated” was diet/exercise/lifestyle (ie drinking etc). He would acknowledge that if this was broken down that it got a little more complex as overweight people who exercised were far healthier and far more likely to beat cancer than thin people who didn’t exercise. He would cover some of the other topics like genetics, environment etc. But I was intrigued by the fact that he skipped the 3rd highest cause of cancer (or the second if you break the combined one down), it was simply unknown. I have a disease in my head that has no known dietary, genetic, lifestyle or environmental components. It is the definition of a gigantic question mark. I am comforted/annoyed/intrigued by the fact that my doctors/friends/strangers point out that “you’re doing everything right” by listening to medical restrictions, being compliant on meds, shifting up the diet, staying healthy, enrolling Kiana in counseling. And I don’t believe I’ve done everything right but I do like my batting average but even so, so much has gone so unexpectedly right and so unexpectedly good. Yesterday, as we have before, I pretended to collapse and have Kiana find my phone in my pocket and call 911 (all but the dial stage). But then we went walking to Thundercloud where we won the gift certificates too from the Turkey Trot and I called the city of Austin and we’re considering staging a live thing. She’s done it with a counselor and with me but we may actually do a “live rehearsal.” I hope this never happens but maybe it’s worth trying. It hasn’t been settled.
For a guy who keeps a pretty structured environment for his child, mine is simply running. It’s turning out to be Kiana’s too who 3 months into the marathon kids program is 13 miles done. They get me all day as a volunteer today before I do a track workout tonight. The reason I love this run less, run faster program is because it tells you what distance to run and at what speed to run it in. I guess some people do this with books, movies, food etc. I do it literally by getting some direction in how to put one foot in front of the other.
The unknown will be a part of my life for a long time, if not till the very end whenever that comes. That’s tough for the guy who was class president, team captain, board member. Those of us who do things like that is because we want to have some influence over the shape of things. And I don’t on some very big things. I still get pre race jitters but that nervousness, that doubt feeds some energy and shows that I still care. Yeah, I have some serious doubts now that custody is being challenged on my medical reasons but I have faith in the friends who will be testifying on my behalf even as I have doubt. Lilian Smith wrote            
Here’s hoping that holds.

Sunday, December 2, 2012

The War on Cancer

A few people asked what I was doing to celebrate the 1st month without cancer appointments… interestingly, appropriately enough, a friend from running had invited me to a lecture about running and another had invited me a lecture on Nixon’s the war on Cancer.  I went and had lunch with Kiana before either of those and made an offer to Kiana’s mother attorney that she could have a letter speaking to my stability once a year and know if I was ever hospitalized immediately and within 3 business days why (obviously doctors wouldn’t’ t necessarily know why immediately) in exchange for my medical condition never being used as a way to challenge custody while those things were provided. They suggested that I would sign something where if anything ever went wrong medically where I’d sign custody over immediately to which my answer is of course no. When, if the day comes where my custody is going to be continuously worse, I’ll sign over custody of course but just because something goes wrong doesn’t mean it’s major. We have had things look odd in blood work, in EKG, something looks a little odd in one of the MRI’s well that may happen but that’s not necessarily cause for panic, just cause for more close monitoring and I don’t feel the need nor that it’s the right thing to do that someone who couldn’t stay when they had full access to my medical records should get them well after they left… if you disagree with that… well that’s going to be something a judge can order until I am truly incapable of taking care of a child and I think I’m miles from that. People will illness and without driving have raised some great children.

 I’ve struggled with this insurance deal having had so much of my identity in my employment since so young but I am still committed to the fact that no one says on their deathbed I wish I’d spent less time with my kid and am coming to peace with it. I am volunteering again at Marathon Kids on Tuesday and Austin just opened up a brand new young cancer survivors who is about to get a very dedicated volunteer. They both know that they only get me till about the time Kiana’s about to get out of school because that’s where my time will be spent. She’s at an age where she loves being with her dad and there will come a time where she tells me to go away and I will but until then…

Those two lectures being on the 1st month I didn’t have an appointment in the end were incredibly appropriate. The first was on how humans are built for long distance running better than any other animal on the planet. It was a great presentation on how Hussein bolt couldn’t out run any common goat but humans can beat horses etc over the long haul. It helped me commit a little bit more about how I’ve got this 3 hour marathon I want to break in a few months.

The second was the war on cancer and it talked about how Nixon wanted to beat this disease 41 years ago and we’ve made plenty of progress but we’re a long way from home. The person with me had a notebook and then it hit me. Part of my frustration with life has been that I’d never really had to take notes in my entire life (I know, I know, people who always have right now are rolling their eyes on the fact that I’m writing this down, sorry). And the weakest part of my memory under the neuropsychological testing has been auditory memory and as I sent pictures off for this lumosity profile they are going to be making of me… another thought hit me. All of lumosity’s games are visual in which my memory has always come back and I haven’t in anyway really practiced repeating things said out loud or trying to remember them in the way that I have put in tons of time and effort visually. (Lumosity might have gotten an email to me). I remember the graphs from that night, the pictures far better than the lecturers. The graphic that stands the most out is the one where the FDA process has stopped many drugs and procedures, some of which have been in the system for over a decade aren’t readily available.

The face name recognition is complicated because it’s not everyone, most everyone and some people sink in. Perhaps, it tells you something that even Lumosity’s app for facial recognition is only at the beta stage. The two parts of my brain issues that have never gone up or down is “problem solving,” still daring to be a dreamer and hoping I’m not the only one, consistently at the 97th percentile. So this weekend, I went to 3 parties. The first one was all friends that I knew before this so it was pretty simple. The second 2 I knew one at except the person who took me so I started trying to have conversations with a lot of people, my style anyway and then sit and try to figure out which ones I’d met and what I’d sat. I figured odds were I wouldn’t see most if any of them so the super social guy was the guy in the corner playing “mind” games. I’ve learned to make notes about this person’s glasses, or earings, tattoos, a unique feature while I’m absorbing people’s faces. I have no great pattern there but it was interesting to try to play with it.

The lecturer at the war on cancer lecture was interesting in the sense that he acknowledge that it’s complicated. Before the lecture, outside there was a booth and like at many of the cancer related events, nods and ribbons for different cancers and like at many of the events, not a single one for brain cancer. I know, I know that it’s less than 2% of cancer and has a very low survival rate so at some level I understand why it’s neglected but the conflicting emotions about that are tough (part of that as reflected above is that the brain alone is complicated and so is cancer so combine the two…). It was reflected if nothing else in my question at the lecture, “how do we proportion the research, is it based on survival rates or on number of people who get this type of cancer?” Some of this is true but some of it is based on which lobby is more powerful or which lawmaker’s relative has the right disease. Some part of my stomach churns at that but some of it understands because well to help my daughter alone I’d try to change the world, something most good parents/grandparents/siblings would do in a way that most of us don’t for the thousands of children far away that starve to death everyday. I’ve tried to balance this by continuing to help I helped out long before, help out with things since then but keeping it both cancer in general and brain cancer in specific, cancer survivors in general and young ones in specific. It’s an interesting couple of years.  Either way, that lecture sure made me realize that cancer is more like the war on terrorism, it’s more amorphous than the days where we lined up and shot at the enemy.

Still, the day after that lecture, because I’d been dealing with the attorney and gone to the lectures and having lunch with a counselor and visiting my daughter for her lunch since she was going with her mother for the weekend, I missed part of my Friday routine of studying the route for the first time in a while. My spatial orientation has gotten better but for the first time ever my group saw just how bad some of it was in that as I got lost several times there were a few people I passed 3 or 4 times after I’d corrected the mirror. They also saw how bad some of my short term auditory memory works in that they’d tell me which way I’d be turning and when I’d get to the next turn, I’d get there. This is not a problem in day to day life because my iphone lets me cheat/compensate but in running that luxury is not there (I am glad that most of the races I run are well marked).

But we got through a month without them and it looks like here comes another. We’ll keep this war on cancer up in my life, using the running, the friendships, learning how I can to keep going. And like terrorism it’s probably not ever going to be completely clean or completely done but I gotta keep going.  That expressed itself a lot on the first weekend after a momentous month.  I finished my Christmas/Holiday cards. I ran more this weekend than I have any other (36 miles, some of it was horrible, some things are good hot and humid, running is not one of them). I did lumosity. Kiana got her first Christmas present. I am accepting that starting next month that long term insurance due to my brain issues and seizure risks kicks in and I’m “retired.” A lot of this stuff has felt odd and like losing or cheating or not doing the right thing honestly. But I hope to God that I’m doing what’s right. I know that’s at least what I’m trying to do. There’s an old story about a guy who says to God, which is how I view life some days, “I’m not always sure what’s right but I think the fact that I want to please you, pleases you.” I pray that’s true in my life.


Friday, November 30, 2012

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 ( 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.

Thursday, November 29, 2012

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 12th, 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.

Tuesday, November 27, 2012

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(, how athletes have a higher rate of survival in cancer, how a programmer with a similar diagnosis has made it an open source thing ([])...

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.

Friday, November 23, 2012

Thankful Secret

Two years ago, I got out of the hospital November 11th, 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, 71st 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 15th, 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.

Wednesday, November 21, 2012

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 30th 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.

Thursday, November 15, 2012

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 1st… 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 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 ( 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.