Thursday, March 29, 2012

Getting Old

Douglas MacArthur said that aging wrinkles the body but that quitting ages the soul. So while I made plenty of fun of both my grandfather and great grandfather about theirs, I hope I get to earn some of my own wrinkles. And while getting older is something that no one except kids gets excited about, there are worse things than getting old. Not every race is won, not every battle against diseases is won, not every relationship works, each attempt a little girl takes at riding a bicycle doesn’t end well but it was good to see that Kiana followed the Japanese saying that if you fall down seven times, you get up eight. With that said, speaking of Bike Rides, we’re a long way from starting the campaign or setting up all the details but if you want to get in the grassroots of the biking event in Davis or join my team: I'll have on my helmet in honor of my aunt and the survivor sticker.

That “getting old” idea keeps popping up. A friend recently once asked if exercising for events like a marathon or a 100 mile ride doesn’t get old. Another was sitting there complaining that we’d be in our 40’s and old in no time and it was good to get her smile when I responded that I’d be grateful to get to 40. Another wondered out loud and then apologized for asking if all these medical appointments get old (9 medical claims this month, turns out sitting in an ambulance has a bill even if you don’t go with them). My cousin who lives with me and watches me tweak the Boston playlist (yeah I’ve spent a lot of time on it) and asks if it doesn’t get old to put more time into a playlist than I will listening to it (latest addition which Kiana has learned to sing along to is Will Smith’s Just the Two of Us). And the best old connection of all, after Kiana mastered riding a bike last night and we talked about all the different things that go along with it and how I was going to have to learn some new things like using clip in medal about riding a bicycle, she asked how old I was and when I told her 31, she said she would make sure to learn all the same things by the time she was 25 before she was SO old! (On a related note, this is the part where those of you seeing the picture reprimand me for the fact she’s not wearing a helmet). And Kiana who has been a little too excited about the Lorax movie helped me accepted that I might have to finally accept that I’m getting old(er?) when we planted a second tree at her request, a mulberry one, to think that I saw it on Mulberry Street. Somewhere in my mind I wonder why there’s not a Dr. Seuss theme park.

The second round of blood work resulted in that this new Keppra is at a more appropriate level and we have a follow up a few days after Boston where we’ll do some more tests and yeah, I intend to ask how hard I can keep pushing the body because someone from Livestrong suggested I may have a title to defend at next year’s Marathon. My knee results came in and while it seems to be worn on some cartilage and I have to wear some tape but its nowhere near bone on bone so while it’s not perfect, things are never so bad they can’t be worse. Either way, apparently the switch to biking for a while will help. Kiana starts with Wonders and Worries on Monday and I both wonder and worry how it will go. Her mother refuses to do counseling with me about how to better coparent or setting up a plan in place if things ever go south medically until and unless this blog goes away. We’re going to start the cognitive rehab and the biking training after Boston. And to answer the questions, of course sometimes this gets old. I am the guy who only watches movies once, read books ones, visits places once but I’ll take getting old because getting old beats the alternative.

Monday, March 26, 2012


A friend of mine over a year ago told me a story of someone who, because their future had very little time left, made a resolution that they would take every social invitation they received. They were on chemo at the time and had little energy but in the end, when they passed away, theoretically a little bit faster than they might have without all those parties, they had attended a lot of parties and were exhausted at the end of their life. I see it like the end of a marathon, there is such a thing as good exhaustion when you get to the finish. I make New Year’s resolutions every year and that was one I made this year to take every invite I can. It hasn’t been possible as a single dad to make them all and frankly I’ve always been someone who loved being with the group but because of that I’ve attended lots of parties so far this year. But I’ve also agreed to take service and help invites. This has translated into serving with this committee or that function because those things matter too, and perhaps more because to once again quote Lincoln, we have to hang together or we’ll hang separately.

This has created some adventures like having hosted 11, 22, and 20 people at my house over the last 3 weekends for the club, men’s college and women’s college ultimate tournaments but they’ve all been worthwhile. I’ve trusted my gut and turned down a few things like a paid appearance for a running thing on a product I don’t use. I turned down one Livestrong event and a seat on the UPLA board because they both would have required me to have a regular babysitter for stuff and I just want to say I was there for my daughter as well as I knew how and as much as I knew how (though again impressing me Livestrong offered to provide a babysitter). But I’d rather be the one there for as long as possible and teach her that I don’t care what career she becomes but I hope it’s never a quitter. There were some echoes of our joint spirit this weekend.

My knee is still acting up from that ambulance event. In what should have been my last 20 mile run on Saturday morning, I couldn’t finish even 5 miles because I kept having this shooting pain from it. The president of the Austin Runner’s Club found me on the ground and was very gracious. I called the doctor’s office from my sports doctor (Austin Sports Medicine) and left a message and then did something showing both resolution and that there’s something wrong with my brain and tried again the next day on a loop near my house that’s 1.4 mile (in case something went wrong I was never too far from the car and it’s also a flat dirt trail). 15 loops of monotony since I thought this last 20 miler had to matter since it’s the last one before Boston. It was the worst training run ever of my life in both dullness and that it was pushing 80 degrees but I finished it. Shortly before going on it, I tried to teach Kiana how to ride a bicycle without training wheels. She did a decent job but eventually collapsed and cried that she wanted to quit. We walked inside where I couldn’t apparently do enough consoling because she fell asleep crying, a sight no parent wants to experience. That image kept going through my head as the Boston playlist kept helping me. And in one of those moments of angels unaware a lady who saw one of the Gatorades half empty near a wall was about to throw it away when I yelled at her to stop. I scared her a bit but telling her I was on mile 14 of a 20 mile run and her seeing that I’d drained nearly 4 bottles already she went to her house and brought back 3 more. It’s still amazing to me how great humanity is.

Yet, even bigger, it made my day when later, after my 20 mile run, Kiana came to me while I was icing my knees and said all on her own, “can we try on the bike again tomorrow?” So we did try again today and she made a lot more progress (both times by the way, this little fashion queen wanted to wear her boots instead of other shoes because it was what most matched her oufit). She fell again and started bleeding from her knee and wanted to go inside but this time almost immediately after putting on a bandaid on, she went back out. She’s not the next world class cyclist but the neighbor was impressed at how quickly she was getting it since her daughter had struggled. We’re not there yet but I am glad to see she has the resolution.

Boston is 3 weeks away… Kiana is coming as is my mother and my little brother. I see the doctor on Wednesday, somehow both annoyed and grateful this appointment has nothing to do with my brain. I’ve been trying to stay focused on the training and hoping that the weather and the knee don’t win out in Boston. And let me say explicitly that if I don’t get my best time out there and break 3 hours, I’ll be rather disappointed. But a team of wildhorses couldn’t keep me from the finish line no matter what the time is and I hope it ends with a hug to a little girl who has figured out how to ride a bike.

Friday, March 23, 2012

One Dance

I sat through my aunt’s memorial service for my 52 year old Aunt on Wednesday, by far the closest person whom I knew who died of cancer. The ceremony, like the family was deeply Christian with songs and texts quoting the Christian text in Revelation “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” It was heavily emphatic on the hope of another day where the family is reunited. I would have a conversation with someone else there who isn’t Christian who shared their views on reincarnation and death being a freeing of the soul. I was atypically quiet during all of the services and the after dinner. People shared stories and laughter and sadness, the family making an unusual request that if they were crying to let them do that alone, letting the overwhelming sadness be a private moment.
I sat there and remembered the orchata she made and the fact that she always was kind to us in complete sincerity and reprimanded us with as much sincerity but less conviction, kindness flowing more easily. It was good to see that her children were there and took it as gigantic compliments that they were much like their mother in their looks and character. I am not sure Kiana should ever take either of those as a compliment if someone said that to her about her father but it sure makes me want to continue to work on my character; the looks there’s not much I’m going to do about. Still, it was a great service with the family both reflecting the current moment and holding on the hopes from their faith.
As someone who used to be a preacher, who comes from a big family and who volunteered in the Marshall Islands where funerals are a community event, I’ve been to far too many funerals and memorial services, burials and cremations for a guy that’s just 31. There has been the range of black clothing to ones where lots of alcohol and party facilitated the tears or was drowned out by laughter. People sometimes think this never hit me originally but it did because funeral plans were drawn up in case something went wrong with the surgery and this kid who always wants to have influence over how he interacts with his friends had even given my ex 3 different statements to give out if surgery went okay, bad, or deadly on my facebook. Todd (the guy who will be the executor of my will, but to this day is incredibly kind by saying that he’ll give a eulogy but it’s not going to be for another 50 years… at least) and I had a very fun evening a couple of weeks before the seizure that would start all this. A friend of ours was doing the Komen Race for the Cure and we had both donated money. I’ve raised money for Junior Achievement, Habitat for Humanity, my daughter’s day care and various organization that I’ve had loose or tight connections with through tournaments or races and he asked why I’d never done one for cancer. I said then, I’ve never really been close to anyone who died of cancer. Less than 2 weeks later, I’d be diagnosed. In between those two we went to an improv show where the comedic routine thrown out to the group was worst line ever delivered at a funeral and there were some funny ones though I honestly can’t remember any of them. Todd and I went out to eat after and talked about that piece and we tried to come up with our own and the one I came up with was that he should say at my funeral was “Psssh, so what, I’ve got two other friends.” I couldn’t convince him to promise to say it at mine but I’m still hoping.
My uncle whose wife had just died of cancer kept introducing me as the guy with brain cancer, making me uncomfortable but I wasn’t going to tell him what to do or say at his wife’s memorial service. Still, it made me remember and wonder about my own funeral. As I’d sat last year before, the surgery, I told people to make sure I didn’t have one, that I didn’t want any romantic sentiments, just to be cremated and flushed down the toilet. Todd rolled his eyes and reminded me those services are not for the dead but for the living to process the senselessness death often has.
I listened to my Boston marathon playlist on the way home from Houston and realized that there are two elements that come out more often than anything else. The first is that we have one shot. I don’t know if there’s a heaven or reincarnation or if I die tomorrow if I get to meet with the ones I loved here ever again. I like the sentiment (which is why there’s songs like Amazing Grace early in the process) but the songs on my playlists in the end, when the marathon will be getting tougher, are songs like Bon Jovie“It’s my life and it’s now or never I ain’t going to live forever,” from a Bug’s Life, “It’s the time of your life so live it well,” and Eminem’s “you only get one shot, do not miss your chance to blow, the opportunity comes once in a lifetime yo.” I think I made a few mistakes in the Austin Marathon playlist but I also think I made a mistake in the mentality to be thinking about Boston before Austin was done. I would be sitting in an ambulance less than 2 weeks after that and am in the middle of many medical tests. I appreciate and fear the perspective cancer gives you that the future is ridiculously unpredictable.
The other element that comes out over and over in the playlist is that there are just all kinds of references to dancing. I don’t know if I’ll ever end up with anyone again but if I do, they better be able to dance. Caedmon’s Call “Dance” is on there, “Why don’t we just dance” “Cinderella” about dancing with my little girl to name a few.
So tomorrow I do my last 20 mile run before Boston, perhaps the only time I’ll ever get to run another marathon, but I also have Kiana’s training wheels to take off and show her how to ride a bicycle. And once we figure out how to do that we’ll go home and dance to celebrate it. Someone would send me a poem because they knew I was struggling with this death of my aunt. I can’t improve on what it says so let me finish with that and just say if my memory ever gets eaten away that I hope this is one of the last things to go:
In those days,
we finally chose
to walk like giants
& hold the world
in arms grown strong
with love

& there may be
many things we forget
in the days to come,

but this
will not be
one of them.

Wednesday, March 21, 2012

The Better Part of Valor

It’s stated that discretion is the better part of valor and I don’t disagree which I suppose would make me a coward since discretion is not at all my strong suit. After whatever happened two weeks ago where I was unconscious at the end of it, I tried to deal with the two parties that didn’t handle this well, Kiana’s mom and my job, and share some information with them. In my work, it ended up creating a hassle but my doctor filled out all paperwork to where that’s resolved. With Kiana’s mother, I hope it helps us get into counseling where we figure out both how to improve our coparenting communication and to put a plan in place in case the custody situation ever needs to change for medical reasons, both things which I more than concede will be rather difficult because signing up for my daughter to spend more time with a guy who would offer his parents’ house during the scariest and weakest point in my life while actively lying to both our families isn’t someone whose ethics I want my daughter to have anything but minimal exposure to. But perhaps, in one of those measurements of increased impulsivity, I should figure more of this out before telling them within 24 hours. Like too much of my life, there is no clear road map.

The doctor called me yesterday to come into his office where the second opinions of my case had been weighed in. It appears that we didn’t get close to having a seizure in the tests though to no one’s surprise there showed some irregular activity in the left temporal lobe. There also didn’t appear to be anywhere near enough keppra in my bloodflow several hours after I had taken the last dosage. I was told to do another blood sample this morning now having been on the higher dosage for a couple of weeks and to do it very shortly after taking it for a comparison. It turns out the blood work reveals I have very efficient kidneys and liver which means electrolytes need to be kept well tuned. (I’ve never been much of a drinker because it takes me forever to feel the alcohol and now we have medical confirmation as to why though the conversation had enough electrolyte mention to where I might have bought some Gatorade on the way home). We’ll see what this new blood work shows sometime next week.

After the doctor’s appointment, I went out and did a track workout and headed home afterwards, giving the princess a bath in which her splashing made too big of a mess in the bathroom. While that was going on, I got a text message that my aunt had died of cancer. She’d been struggling for a while so no one was surprised but we were all disappointed and heart broken. It had originated as breast cancer and spread to her bones and eventually would take her but her children and husband were there in the end and they say she seemed at peace with it. Hearing this messed with my emotions in a thousand directions. I certainly thought of the discretion factor in that they were more discreet about it than I’ll ever be. I sat and did more of the brain rehab games in one night than I had done in months because of course that will cure cancer. I sat and remember the times my aunt fed me as a kid and the jokes we traded as adults. She came by a few weeks after the diagnosis and I am disappointed in me that the first time I’ll “be there for her” in a while is at her memorial service. I recognized a little more the significance of what the doctor told me about the “upside” of brain cancer, that it doesn’t spread to other parts of the body because those cells aren’t anywhere else. I called Kiana’s mom and asked her to watch her since 5 is probably too young for a memorial service of someone she didn’t know that well. I told her why she wouldn’t be staying at home tonight and she had a few questions about a memorial service. I answered as well as I could but then couldn’t hold it together any longer and just hugged her and tried to cry as discreetly as I could hoping it’s a long time before she ever has to attend a memorial service of anyone she’s close to. As I saw and watched people post pictures and sentiments on facebook about my aunt, I echoed again the sentiments of organizations like cancer sucks and mAss kickers.

Even knowing I wouldn’t sleep great, I had no objection when Kiana asked to sleep in my bed. I moved some money from my checkings into that saving account that I started to try to take that trip to Disneyland. While I usually run at night, I got up (and by got up just simply acknowledge I wasn’t sleeping that well) and ran at the crack of dawn this morning. After breakfast I headed over for some more bloodwork. November 4th, 2010, I’d never had a health insurance claim EVER. March 21st, 2012 I’m in my 7th medical appointment this month. A guy in the lobby Arch, 85 years old and like me an over sharer, starts telling me about how they’ve taken cancer things out of him 4 times, 1972, 1983, 1996, and 2005 and about how much more impressed he is with the new technology. I hear about this and plenty more about his grandkids and his job (which he loves so much he’s still doing it at 85). I just listen to this man who is speaking loud enough and indiscreetly enough to where quite a few people can hear him. Another man in the lobby also there for some bloodwork, although for heart issues, says “I hope I get to make your age no matter what and thank you for sharing” as he gets called in.

The guy who is going to help me train for the bike ride is 15 years surviving but has a tattoo of his brother’s name who died not too long after the diagnosis. There are many times where it’s strange to be known by something I don’t remember and can’t control but I try to keep aware, that for as long as possible, that I’d much rather have part of my life be known for it than simply to be remembered for it.

I process this infilitration of my brain in a lot of ways. Cognitive rehab, running, raising money for both research and awareness, this blog but above all else, the human connections help me get through the day. When first diagnosed, I read a blog of someone who kept track of their medical appointments on a tumor in a different area and it helped me to know that someone else had sentiments that rhymed. Last night an aunt died of cancer, today I listened to someone share how they’ve beaten it four times and will turn 86 soon. Who knows what camp I’ll end up in and who if anyone will be there to hold my hand on the way out whenever or whatever I die of, but the graciousness of all these types of people is where I get the little valor I have. And I feel no need to be discreet about that.

Friday, March 16, 2012

Training Wheels

This week I spoke with the neuropsychologist who I am going to be doing some cognitive rehab with. Last year, the guy who did my evaluations said that if he felt it was necessary that I should just start it whether or not insurance approved it and pay out of pocket and while I did some of that, this year we’re waiting to see if the insurance approves of it so that the costs are less (time is not as critical). In last year’s evaluations, he informally recommended Lumosity as something to consider and this year he believes the results from it show enough to where it’s a formal recommendation. It’ll be interesting to see how this one on one rehab will go. We talked about it and the short version is that it’s going to be trying to both improve and compensate for some of the ways some memory and language things have shifted. I’ve come to accept that will power is a great thing but that sometimes you need help and sometimes, the guy who used to be able to remember everything has to swallow his pride and do little things like get an app for his iphone that lets him record things, use that camera to take pictures to remember things. It will also try to change apparently an increase in impulsivity which I still don’t understand how both of my neuropsychological evaluations show me as being more calm and yet more impulsive simultaneously.

I also sat with a counselor from Wonders and Worries this week who will be meeting with Kiana for at least six sessions and give her some ways to process it. I’ve tried to do address some of those things on my own with Kiana by some of the Livestrong functions, some reading material, taking her and showing her the MRI and just saying things to her where she very cutely says, “Daddy has a booboo in his left temporal lobe” even teaching her where to recognize it in a chart of the brain. But when I trained for the marathon on my own, the first time I did it on my own and the next year I did it with people with more experience and it went much better. Maybe after whatever made me unconscious two weeks ago and after all the one year follow ups, it’s time to recognize that someone with more training should have been called in the first place but like so most things in life, it’s better late than never. They pointed out one thing that I’m not sure where they’ll go and I’m not sure I have an explanation as to why we’ve never done it but they asked if I used the word cancer around her and somehow I haven’t, and I wonder and worry whether or not naively I think protecting her from the word protects her from the other effects. I am back driving and everyone keeps pointing out that it's great to have my independence and it is but the best part of it was that, because Kiana is with her mom this week for spring break, I went and had lunch with Kiana at her daycare 3 days.

This week, I also sat for the Livestrong postcard photo shoot at Mellow Johnnys where I got introduced to the Trek bike that I’m going to be lent for the 100 mile bike ride at the Davis Challenge. They measured my height and torso to get a good fit and tweaked the seat and the handlebars and I learned that riding a bicycle is well not like riding a bicycle. As they tweaked things and mentioned how having things down to the right millimeter mattered, I remembered the last time I heard things in millimeters matter was this growth inside my head. The guy who is going to create my training schedule talked to me and said that while they are worried about getting only two months to train me, they don’t want to lend me the bike early because he wants me to stay focused on Boston and apparently running can help cycling but not vice versa. They are hoping to raise $100,000 for Livestrong through this campaign, a thousand dollars for each mile I ride. Afterwards, I asked the guy helping me out what this type of bike costs…it’s more than I make in a month. So I’ll be riding a loaned bicycle that’s about what men should pay for an engagement ring so I guess we’ll say that I’m committed to this event. And if things go right, it will raise more money for that organization than I make in two years. That’s astounding…but I hope that any money that is related to me and cancer is always far more going to things like this and the Brainpower5k than to my medical bills. The guy who is volunteering to create my training schedule will be someone I listen to a lot about equipment and exercises because (roll eyes here), there’s no need to reinvent the wheel. Actually, he said the main muscles I need to work on more than from running are the core muscles since you lean more on a bike. I did a lot more (read as did some) sit ups and pushups that night than I had done in a while.

And the dots kept connecting this week. Matt Cotcher, a friend I made at that 5k that talked me into doing a Mohawk was over for dinner. It was the first time we’d ever had a chance to talk in person 1-on-1 and as he told me about his rehab, staring at a mirror trying to remember to use both sides of his face to talk, that some of his physical impairments have made it difficult to find a job, I counted my blessing that my rehab is what it is (with that said, I made a mistake at work where trusting my own handwriting that because it didn’t have enough details helped me misremember something that caused some problems). I met his wife Amanda for the first time, a woman who by his own admission is well out of his league, who was engaged when all of this came up and put off their wedding so he could do some of that rehab and has been married to him for a while. No words can adequately describe the fact that he recognizes that blessing. Just by remembering that he had talked me into that Hawktober event and knowing my hair was too scruffy for the photoshoot the next day, I went and got the most expensive haircut of my life from Floyd’s with the same guy that had done my Mohawk. I’ll probably never value my hair that much but I will grant that I understood why my $8 haircut is not as good as that $20 one.

They asked me a few questions more for the interview and I answered them as well as I could but they asked if there was anything else new I was going to do in light of this…and there is. Kiana’s with her mom this weekend but next weekend, I am going to take one of those big steps that I still remember being very frightened by and very comforted by when my stepdad hugged me after I fell, I am going to take the training wheels off her bike and help her ride.

Monday, March 12, 2012

Better Sloppy

I have had the opportunity to help organize or direct several ultimate tournaments over the years and have gotten lucky enough to never have to cancel one due to rain. Now, it’s rained on a couple of them but due to the good team work we have at the Ultimate Players League of Austin, we’ve always managed to find back up all weather fields, once literally the morning of. Ultimate being a field sport, it ends up being ridiculously sloppy with you often covered in mud. This year I returned to directing Centex after a year hiatus since someone else ran it last year since it was a few days after the surgery. The weather was absolutely miserable and the fields were a mess and teams would drop out despite it not being cancelled (it was somehow comforting that despite teams dropping out at the last second and one game cancelled to thunder that my mind worked quickly enough to create alternative schedules that were decent under the circumstances). It was more than frustrating but I got to play with a team from Mexico and finally just stated to the captains hoping they weren’t too annoyed that, “Like other things in life, sometimes it’s better to get it sloppy than not getting any at all.” One of the female players at the tourney said they only do things right. Interpret that at will…

Different tournament participants came and talked to me about different experiences that keep this aware. One of them was actually a friend’s mother. It is amazing the number of friends who have said, my mom asks how you’re doing and unlike a lot of other times, I actually grow up and pass up the easy “your mom” jokes on those scenarios. One of the ones from Mexico, who coincidentally, had been here shortly after the diagnosis and it’s the first time I see her, handed me the nicest rosary I’ve ever received. While I’m not Catholic, I will always cherish it. Someone else shared about how they recently learned they have a problem in their brain that could cause seizures and are trying to figure out to tell their family without over worrying them. Another told me about how their brother is going through their 4th colon cancer surgery and their wife has just left them and how they shared the marathon stories with them and made their brother cry. I listened and hugged each one of them, unsure as to what else to do. More than a few people came and asked about the seizure but only one tournament participant, me, noticed that like the previous time, the first time I played ultimate after literally being off balance, I was again physically off balance.

Today I had to call back my neurologist to get the final conclusion of all my bloodwork and EEG stuff. With almost no exceptions, after tests, my neurologist has said to call me a few days after the appointment to get the results. While it could be him passing the buck about taking charge of my own health care, and while he’s never said so, I really do have this gut feeling that he’s done that as a way to both test my memory and to keep reminding me to stay engaged because when the MRI issue came up he called me long before I would have called him. The results are that at the new level, Keppra is fine though he now again highlights that we should stay at this post surgery level since apparently my level of exercise makes it go quickly through my system. The EEG shows my brain is still staying up to speed (though there is still post surgery “waves” that are irregular to a normal brain due to the hole) and that, during the EEG, we didn’t get at all close to having a seizure, apparently my lightheadedness and finger tingling were more about CO2 over loading.

It was a packed weekend while sitting here waiting for these results. There was an ultimate tournament, a couple of birthday parties, a couple of meals and my own fine wine and dine party (tried heels on for the first time, forcing my respect for the female gender to grow. I’ve got some friends with good taste in both food and wine and there’s still some left if you didn’t make it). My friend Adam from Australia, hadn’t seen him in years, was staying at the house . We sat and talked and he wondered why I didn’t pursue any of the girls at the party (there were some cute ones). I told him simple truths that I haven’t done this since high school, the events with my previous spouse left me pretty emotionally crippled, that I was focused for Boston, that I had a princess to raise but then started talking about that reality that I am content with the fact that I’ve accomplished some improvements as a runner, father, tournament director, employee without someone attached to me. Then, with a little more wine in me, if I am honest, I stated that bigger fact that I am also worried about protecting anyone from my tumor and afraid of them leaving if the going gets tough, neither wanting to damage nor be damaged by anyone. I made a decision when I got the tumor to not make any new friends because I didn’t want friends who were my friends out of pity and my pride wanted people to like me only as a whole person but well, that day is never coming again so now what? And I said to him, as I’ve thought to myself, I got through the last 18 months, what I hope will always be the roughest 18 months without a loyal “significant other” (though there were plenty of significant people), so what’s the point of signing up again?

The Livestrong Interviews will come out soon and I’ve seen a rough edit of one of them to see if I approve (I responded with no changes since I don’t really know what to say). They seem okay and accurate and fairly edited to me and I hope they’ll help someone. Like some of the other stories, my wife leaving and filing for divorce shortly afterward is a small part of the story in one of them. But Adam listened last night and essentially made my argument about the tourney back to me, that maybe I should be more open to a future relationship might be sloppy but is it better than nothing at all?

Not having a tumor would be better than having one but I’d take it over losing some other things. Not having passed out during a 10 mile run would be better than not but it’s better than not being able to run. Having won the cancer division and getting a PR would be better than shit having happened and only getting one of those... Kiana being raised by two parents constantly there but the sloppiness that comes with single parenthood, I’m glad and grateful to be the one there. But in regards to opening that part of my heart up, I honestly don’t know if it’s better sloppy or not at all. But life, as a single dad who is at times overwhelmed, I hope I always keep the attitude that life’s better sloppy than not having it at all.

Friday, March 9, 2012


There are times I wonder who is who or where we're at in this fairy tale of my life but yesterday as I met with the neurologist I remember why I picked him because brilliantly but also very quickly yesterday he shoots off many things I didn’t know. I am on keppra because it’s processed through the kidneys not the liver, and despite the fact there’s a drug he likes better he doesn’t put me on it because of how much sweating I do and my saline likely having wide variety. We do some blood work and because no one saw it, there’s apparently a couple of things it could have been with things coming up inconclusive (it might have been ironically something I watched one of my friends have as they removed my staples). We spend some serious effort trying to trigger a seizure during an EEG with me having to breathe really hard in and out my mouth for 3 minutes (not the funnest thing I've done breathing hard), causing my fingers to tingle and also by flashing me with many strobe lights. Both, thankfully, fail and after some discussion, no driving restriction is placed on me though because of the blood work and the fact that I’ve doubled on medication I’m told to take it easy for a few more days (interestingly enough I’m given a warning to be careful about the fact that it might increase my temper for a short while until it absorbs quickly reminding me of events a year ago, the first time we’d doubled it that quickly). We acknowledge quietly that while we hope it was something else that it well could be one of those stupid invisible branches.

It turns out that somehow I had missed one page of the neuropsychological and we are actually going to do some neuropsychological rehab starting soon, to give me some compensatory strategies (let the jokes begin about what I’m compensating for). And it turns out that part of the reason we have that Boston deal is because unlike anything else when you’re finishing a marathon with all you’ve got certain things get released into your bloodstream that don’t necessarily mess well with some drugs, the same reason Duke wanted to wait for the surgery to be about a week and half way out. But I can get on the road again even if my pickup line of inviting people to have a slumber party is going to be less effective.

I came home last night both grateful and flabbergasted. I may have had a few more Oreos with Kiana both of the last two nights despite it not being the 100th anniversary. She’s not complaining and I promise we won’t make a hobby of it but she sits and helps me pick and add a couple of songs to the Boston playlist. Learning from past mistakes every one of the songs is either about good things about the present or looking forward to the future. But with one particular song my friend Zach sent me, we spend some time dancing, Cinderella: . I break down and cry from the news that things are good as they can be right now , from the privilege of dancing with her and because of the lyrics:

So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew
Oh, I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock will strike midnight
And she'll be gone

Kiana wiped away a couple of the tears, offered me that Oreo and said let's keep dancing. She’s coming to Boston with me and I’ll be leaving all my might out there. But it occurs to me that this little girl who has loved way too many of the Disney princesses, that maybe I should try to pull a trip off to Disneyland before school starts next year so that those imaginary princesses can have the privilege of meeting a real one. And I hope I make midnight.

Thursday, March 8, 2012

The Right Coverage

Last night, I finished a 5k Happy Hour that was followed by great Gospel Music and crashed into a few running friends there and with the seizure having happened during a run, instead of the typical back and forth, I get the most questions about something I don’t remember and couldn’t control. I knew I had 20 mile run this morning and an ultimate tournament to run and play in this weekend but I sat there and alternated between working on my Boston Marathon playlist and rereading the neuropsychological report, wondering how today’s neurological results will come in. The seizure tweaked my knee somehow, I don’t know if it was landing or on the way down, and I wonder if it was impact or a twist so I wondered how the run would go. I’d sat and received my neuropsychological evaluation and then gone over to Livestrong where we started working out the details of the training for the ride and the postcard that will go out to 80,000 homes to raise money for the organization. (Let me know if you want one but you have to promise to make a donation.) A friend joked with me about how I’m not the poster child, I’m the post card child and I responded that it wasn’t size that mattered. Another friend and I had been talking about when is all of this attention going to die… and I don’t know but I sure hope it’s long before I do. There is even a volunteer who is going to train me for what I learned is called a century, a 100 mile ride which like a marathon, you don’t do the full distance till the event date (whether or not you are a biker think about coming out, donating or being a virtual participant:, tell them I sent you though eventually in due time apparently they’ll have a guy named Iram who won’t possibly look good in biking shorts on there .) They want to highlight taking a new challenge and frankly the new challenge helps keep the other ones from being completely overwhelming. The biker jersey makes me realize I need to do more upper body work. There is going to be a blog off the Livestrong website after I run Boston with a few entries about my training which frankly biking will make my life easier with the driving limitation.

The 20 mile run is less fun than I’d hoped despite the good company, the uphills, usually my favorite part messing up my knee to where this training run takes longer than the marathon did 3 weeks ago. I get an email about when I can help organize the Brain Power 5k this year and state that I am happy to help. It’s no joke that I enjoy attention, having being a class officer through high school and having organized things my entire life but even as I’ve had some criticism from the media stuff I’ve turned down paid gigs for a couple of running things that I had no connection to. And it’s no secret that as a culture, we highlight the people who succeed despite difficulty, as at some level we should though sometimes the way we define success varies. And the trophies are on my mantle from races so let’s not pretend like I don’t enjoy my accomplishments both because of them and because I worked my tail off to get them. But there are also people who come over to the house despite some neurological impairments and as I notice mine, mild by comparison, I remember that the cracks are sometimes how the light gets in. But every once in a while we get the right coverage done and the Austin American Statesman gave more coverage to the guy who finished last in the marathon than the guy who finished first, coincidentally someone whose home I’ve had the privilege of being in. And I am proud of the guys and gals from the Ship of Fools that kick ass and break 3 hours and qualify for Boston but I am proud of friends I’ve made like Matt Cotcher who despite serious physical impairments has been doing 5ks and half marathons. I’ve been thinking a lot about the possibility of death. My friend Susan always calls me the boy who lived with the scar on his head to prove it. Damn it both when I’m scared and when I’m not, I hope that becomes the norm. Of course, we should cheer on the winners but life is a marathon, and let’s always cheer louder the ones who don’t give up in both real marathons like John Street and like Matt or in the marathons of the challenges of life.

Wednesday, March 7, 2012


Every once in a while, I’ve been asked by friends to go and speak to a friend or a relative who is facing a new diagnosis of cancer (or other serious/terminal diseases) or people who have gotten an unexpected downturn. I frankly don’t know what to say other than keep living like you mean it. Thankfully most of the time I’ve just had to listen. It’s confused more than a few people that I’ve kept doing things like training for the marathon while waiting tests, putting off surgery to it. While most of the feedback directly to me has been about how people like that, there has of course been some question as to why I don’t just take it easier or wait till test results come in before getting back to training. People have said, “there’s no one to impress anymore.” Others have pointed out that a year ago I didn’t want to be defined by this… I am not entirely defined by this but it’s part of me. It's demonstrated if by nothing else things that yesterday while I waited for today’s neuropsychological results I got Kiana Oreo ice cream to celebrate 100 years of the cookie but someone else had to drive me there because I am currently not allowed to drive due to medical restrictions.

There are times where the dark thoughts enter, where you become aware of the fact that you may be tilting at windmills, chasing impossible dreams. But in my daughter’s room there lie some wall words that if you aim for the moon, you might land among the stars. I have a lot of bad qualities but pretentiousness isn’t one of them and apparently self-awareness is one of my good ones. The neuropsychological results are in of where are we are at a year later. Some things are better, some things are worse but “the cognitive problems that Mr. Leon describes in his day-to-day function are very consistent with…test findings.” Both that sentence and the fact that, even if it was just a short notice before the seizure, I saw it coming. Somehow, in a situation where you feel out of control of your own mind, it’s comforting to know that you’re at least clued in.

In that same vain, of all things, the guy who runs tournament, might have gotten left by his wife for running too much of the show and is getting highlighted by Livestrong for having gone and picked his own doctors and not frozen from the diagnosis, it gets pointed out by one of those doctors “at times he seems to be trying to control the flow of testing.” In the end the guy who wants to run the show can’t control one of the biggest factors of his life but that doesn’t stop me from trying which has had some mixed results. The right side of my body is better than it was post surgery but not back to what it was presurgery with that slight weakness on the right side of my body and tremor in my right hand now actually measured. I am calmer in personality than I used to be but my anxiety about life and death is higher. My depression is less because apparently I’ve more carefully resolved some things that happened after the surgery. My IQ is holding in the 99th percentile, my learning new things “proceeds less efficiently than might be expected for an individual with his intellectual ability.” I had actually noticed all of this, why I finally got a smart phone and writing more things down but now it’s measured.

The rehab apps and exercises have gotten me to hold ground or improve on most of the areas but there are still some losses. When that anxiety is up, I do think of characters like Don Quixote living out crazy adventures because something went wrong in his head. In the book version, he ends up giving up on the crazy vision, renouncing romance even when he’d helped other people feel better about their condition in life through that craziness. In the musical, he still dies but does so singing not having given up the craziness. Maybe training for a marathon while doing medical tests is crazy, maybe thinking that the 100th year of the Oreo is a big deal and that your daughter should note it is absurd, maybe. But if sanity is sitting on your couch and watching TV is sane or not painting your toenails with a 5 year old gir is 'normal', then I’m glad my mind is screwed up. I am an odd guy with an odd tumor (3 in a million) that is in the incredibly small percentage of single dad’s being the primary guardian (8%), the incredibly small percentage of people who run marathons (less than 1%). Here’s hoping that I get to be one of the one that beats it, oddly enough actually higher percentages (12% nationwide, 18% at Duke). But if I don’t… here’s hoping I go down like the singing Quixote:

This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause ...

And I know if I'll only be true, to this glorious quest,
That my heart will lie will lie peaceful and calm,
when I'm laid to my rest ...

My body is sore still. My mind has issues. But I woke up from one misfiring on the other to people I loved and telling them that so here’s hoping that heart holds steady even if that idea is quixotic.

A Different Angle

I keep this blog because someone who had a tumor near their memory center eventually would lose all memory pre and post surgery and the entire story of their brain issues is told to them from other perspectives. If I wasn’t going to be able to remember it and had to hear the story, I wanted to hear it from my angle. I also write it because human memory is a funny thing even when it’s working properly, with our present emotions recalling similar emotions in the past, psychology having shown that when you’re happy you more easily remember happy memories, sad, sad memories and so forth. But if there’s anything I’ve learned from being a court officer and seeing people testify to things and having to do it myself, it’s that perspectives can vary wildly and usually there is some gaps between.
I went back to the track workout last night, the first speed workout after the seizure and got to hear some of the other perspectives of what had happened. No one actually saw the seizure and the first two guys to pass me thought perhaps I’d overheated and was laying down to rest, then they remember I’m not the type of guy to do that. They stood over me and then some other people passed by and apparently it took a few minutes to realize that perhaps someone should call 911, the bystander effect. Everyone in the running group would stop including people who had not met me since it was their first or second time there and it would be quite a while before anyone would leave. One of the younger girls who had known me for a while but had not heard about any of these events till recently stated that it became very real very suddently and that it shook her up until she saw me again. Apparently, there was a time where my eyes were open and I was unresponsive and in her mind, she hoped I wasn’t awake and unable to move like those people who end up trapped in their body. One of the older ladies apparently thought the EMT’s were handling me too rough and thoroughly reprimanded them. When I finally came to and started talking, I started joking about how “Man I have some good looking friends” and, we’re having a party this Sunday with some of the bottles of wine I brought back from Sonoma, that they should all make sure to attend the party. As with the previous seizure, more than few people talked about how helpless they felt but that they still wanted to help. I listened, wondered and then went and knocked out 5 1k’s at a 5:15 pace.
A story I heard from several different people was that the EMT’s asked who was going to go into the ambulance with me, who I liked the best so that could be who I would wake up to. There was also a discussion of who to call and let them know. (Kiana was with her mother that night by coincidence or the kindness of the universe so that was a non-issue.) Happily, there were several people who volunteered to be the one who I got to wake up to but sadly, it was unclear who should be the one taking that spot. In the end, there would be four different people that would be part of the transport, two from last year’s journey and two that I’d met since then. In the six nights since this has happened, 11 different people have given me rides due to the driving restriction and 5 different ones have stayed at the house just for extra monitoring (and while they’ve been of both genders, the jokes have begun about how my neighborhood is going to love the number of one night stands I’ve pulled off recently and my work is going to be impressed that they are all classy enough to drop me off). One of them pointed out that people are willing to do more if I would just ask; I don’t know what to ask for besides rides right now. The cure to cancer?
Interacting with my ex about about it is still strange but it appears that for the first time since the divorce she has agreed to sit down and do some coparenting counseling together though the details are still a long way from hammered out. I hope we both have the maturity to waive off any and all of the past and learn to trust each other again with how we raise this moon goddess and figure out how to coparent a lot better than we have been. One of our mutual friends said we should take this as an opportunity for her to move back in and work everything out. That won’t happen because once bitten…
People have questioned why I’m out running again so soon. Well, I do have medical clearance for starters but as I’ve said for years and will always say, no one ever says on their deathbed I wish I’d sat around more. I picked doctors and friends who were blunt and when an event like this happens , that’s both tough and helpful. My doctor is okay with the running but said “Well you have a giant tear in the most active part your brain so let’s keep the medication level higher.”
When this diagnosis first came, we were just hoping to buy time and then there was the possibility that this was not going to be the cause of my death and then MRI’s went bad and now we’re doing additional tests and having a seizure. Maybe this is a shift in the trend; maybe it was just the medication; cancer is not exactly the most predictable animal. Still, people are helping in whatever ways I know how to ask, thus far only rides. People are still coming to the wine party. Kiana still woke up this morning to tell me we needed to brush her hair. Who knows what’s coming from what angle but I’ll brush that hair down, out and sideways as long as I’m capable.

Sunday, March 4, 2012

Wonders and Worries

Sitting waiting till Thursday for some more results, incredibly sore from the seizure (not the workout I’d recommend), I wonder and worry. I wake up to an email from my previous spouse letting me know that her boyfriend, an old friend, is better at dealing with Kiana than I am, don’t quite know how someone who has been away so long knows that or feels the need to state that but still while it makes me wince at the insensitivity and meanness of that… It’s strangely comforting to hope that it may have an element of truth if anything ever goes wrong too fast. Still without some counseling or direction for us to develop a better relationship, I can’t imagine things changing since, I associate that relationship way too closely with brain cancer. This morning I had breakfast with a friend who had trained for the Livestrong half marathon because they’d gone through cancer and since these type of things will never go on the care calendar since that’s mostly for necessary rides, I work out a deal that their primary job is to take Kiana and I to do fun stuff since neither of us are particularly homebodies…
I’d wondered how my ex would handle news of this seizure and that being the first response stings. Last time I worried more about the finances than this time around, both because I understand the whole health insurance thing better and like my plan better and also because, despite having grown up poor, this whole experience has let me know that there’s at least one thing far worse than medical debt. Our new health insurance long term care plan is in place but it can’t be used before July 1st. I am at work on Sunday and wonder if the job I got to come back to love is about to go away again because of the driving restriction, from having my own office and helping kids to processing when they are arrested. This bothered me a lot 18 months ago and it will still bother me this time but perhaps there are times where you have to be grateful to have a job and hope that like last time, if I am moved, it’s a temporary thing. A strange worry that entered my head is the reminder that my wife at the time and I had decided to not have kids after this diagnosis, with both of us thinking it irresponsible to bring another kid in with one parent likely not being there for the long haul. Because of all the mess after the surgery I never made that appointment nor reschedule it but as I looked through the Livestrong guidebook yesterday looking for something, the paperwork came back and I wonder what I should do a year later.
I’ve contacted Wonders and Worries ( in case I don’t ever have quite all the answers or anywhere near the right ones for Kiana. We’ve done some things with Livestrong and some other counseling but reaching out to that organization is something I should have probably done when the diagnosis first arrived; there is no good balance between sharing this with my child and protecting her from it. When I first got this diagnosis, I guess I was in that denial stage because it would take me a while before I’d accept people who were offering help. This time I am literally seized up by the possibilities and turning to help fast (single fatherhood probably has something to do with that)… and don’t know if this will ever take me down but I want to keep standing or at least go down with ridiculous hard swings.
The way this all went down and the way it’s all been handled, I wondered if marrying my high school sweetheart and her deciding there was a better path for her to walk in the middle of a crisis, didn’t mean this would all eventually turn into Kramer vs Kramer. On days I remember that this could severely affect some significant cognitive functions, my worry is that it will turn into I Am Sam. Nonetheless, my friends, family and doctors have an understanding that they will let me know when there’s even a question of whether or not I am capable of being a parent and that I will trust them, which for obvious reasons, trusting them is easier than trusting Kiana's mother. I’ve seen some of each since Thursday, some have stayed at the house it’s a relief so far no one has questioned that.
It’s been less than 72 hours since the seizure and I’ve already had to ride in 8 different cars. I guess I could ride in less if I accepted being a homebody or less of a socialite. Receiving those emails from someone who abandoned you in the middle of all this was pretty emotionally exhausting frankly. When Kiana and I were at the Exploratorium, they had several displays of ways in which emotion over rules reason. The one displayed above is where Kiana didn’t hesitate to drink from a toilet (which guaranteed that it had been nothing other than a drinking fountain at all time). I don’t know anyone who hasn’t fallen prey to that part of human psychology but here’s hoping that throughout the rest of this, we can all be more mindful despite the emotions, within reason.

Saturday, March 3, 2012

Climbing to Inspiration

It feels strange to be told that I inspire someone. This was something that I’ve been uncomfortable from day one when people felt inspired by me having snuck out of the hospital 2 days after a seizure to run 8 miles, one day after a biopsy to keep marathon training and for putting off brain surgery to run the marathon. I wasn’t trying to inspire; I was trying to live. This pattern of behavior was repeated on the anniversary of the surgery when 2 days after the second seizure I went out and ran 15 miles (for the record both of those runs were slower than I usually run and with someone next to me the entire time, Matt Naylor at the first one and several shipmates at the second one). We’re all driven by different things and we know my mind is screwed up so when people tell me I inspire them, I say the same joke I’ve always made, “Just don’t get inspired to get brain cancer.” And then I do what the etymology of inspiration is, I breathe in and let it out. (Speaking of running and inspiration, the blogger recently got blogged about and like the previous time, the writing is better: Only a while before heading to the workout where this seizure would occur I had headed out to drop a couple of bottles of wine from Sonoma for some friends. It turns out the world is at best unpredictable.

I went to work on Friday after the seizure and don’t think anyone would have noticed without me saying something. My doctor said the MRI results showed no growth which is a good thing. The neuropsychological results won’t be in till next Thursday when I next see my doctor. However, there could still be growth because of this thing having invisible branches or tentacles that don’t show up until they are independent tumors. There are still moments where I remember that lady at the store who noticing the scar told me that her relative had diffuse astrocytoma but that the MRI’s showed nothing until it came back in 13 places… I said I was sorry, not really knowing what to say in that awkward of a moment. Today, one of the people in the running group who had seen me unconscious, told them it made them cry and while uncomfortable and trying to be witty I said, just think of death like a race finish line, I’m getting there before you. On the medical front, oddly even if the neuropsychological shows functional change, we won’t do radiation because that will only show loss of function but there’d be nothing big enough to radiate. I had wondered why if the MRI’s show possible growth, why we don’t just go for radiation for a fighting chance. It turns out that this type of surgery that I had, because of the location of the tumor, is usually only done once. But radiation on the brain is only ever done once, especially with something that’s this central. So the reason that we are hesitating is, that like many significant things in life, you only get one shot against delaying death from brain cancer.

I had hoped to spend March 3rd, the surgery anniversary, completely in a celebratory mood and most of it was and either way I’ll be grateful for each one I’m still standing for. My family is from the 7th Day Adventist denomination that like the Jewish faith, we are very emphatic about keeping the Sabbath on its original day and no other. That mentality had driven me to never work on important dates (ie never once did I work on my anniversary during our marriage, I always note people’s birthdays and attend all parties of significant dates that I can) and it was why I had a few things planned for today. If you remember this blog back long enough, the only long held plan was to plant a tree today. Well, Kiana is with her mother today and I wanted her to be part of us celebrating that new life at home so instead of waiting for that anniversary till after she got back and procrastinating on the day, I planted it with her before she headed out with her mother for the weekend. We planted a Mexican White oak (since Kiana’s half Mexican and half white) and she watered it like there was no tomorrow (I hope there are plenty tomorrows) and was disappointed that she couldn’t climb it immediately.

Still, today, I went on my 15 mile run with my running group. Afterwards I planned to go with the ultimate Frisbee crowd to clean up a park. However, with this new driving restriction, I couldn’t find a ride. Instead I went to a kids birthday party and then to see some of the ultimate Frisbee crowd. I also met with the pastor from Job ministries. Then I came home to pick those weeds that I realized were out of line and mow the lawn with my friend Zach’s help (I am basically back up to par but a seizure will leave you very sore and tired and its clear which are my stronger muscles because my upper body is far more stiff than my legs). Afterwards our friend Jenell made us a great dinner. But part of the day was putting together a care calendar which put out this morning by the end of the day had most of the first week full (I hope this attitude lasts cause I will likely need it for a few months). Last time I couldn’t drive I had a hard time accepting help but now as a single dad, I created the calendar asking people’s help in less than 2 days (even noting on my facebook status that I needed someone(s) to crash for a few days just in case anything went wrong, joking that it was finally their time to be little spoon). I’ve always been a planner and on days that will not go with the rides, I’m fairly grateful that I bought the house largely because it was within walking distance of both Kiana’s current daycare and where she’ll start kindergarten and where she’ll attend school for the first few years. But there’s still places we need to be driven to and there’s an online calendar and if you read this and ever wanted to be a chauffeur for school/work drop offs or for grocery hauls, let me know. These first few nights my doctors want someone crashing with me just for monitoring and that’s happening and then a few days from now my cousin is moving in and the amount of help she will provide appears to be growing and growing. A doctor friend said he knows some cute single nurses that he should hook me up with and it’s a sad day when you’re thinking about possibly pursuing dating someone because of medical reasons (no we didn’t make any of that happen).

Still, in the scheme of things, life is great. By coincidence or divine intervention, I am going to be helping Livestrong with the Davis Challenge ( There are 20-100 mile options and while I’ve never ridden 100 miles that was, to no one’s surprise, what I signed up for. I am going to help them do some recruiting of non-cyclists like myself and because the only bike I have is a mountain bike, I am getting a very nice road bike lent to me to train for the longest ride of my life. In my mind, thanks to the two changes, the worst case scenario days are where I get Kiana to school and then ride to work on what will likely be the nicest bike I’ve ever gotten to ride. Again by coincidence or divine intervention, someone sent me the Kelly Clarkson song ( which states that what doesn’t kill you makes you stronger. I am not sure I’m quite that idealistic but I do think that whatever doesn’t kill you, if you focus, makes you appreciate more life than you did before no matter how much you did or didn’t before. And that is a form of stronger. Today, someone who was aware that it had been a year since the brain surgery, asked if I thought of this as my birthday. Oddly I don’t, I think of my first seizure on November 5th, 2010 as the birthday of Life Part II. How this sequel develops is a long way from playing but here’s hoping I get to watch that Mexican White Oak grow to where Kiana’s child can climb it.

Another Day

March 3rd, 2012; 1 year since I had brain surgery. When people are stressed, a piece of wisdom that I was given and I share on occasion is, what was stressing you out six months ago? It always blows my mind that the number of people who simply cannot remember what was stressing them out six months ago but it often puts things in perspective that maybe what stresses us out…is not as important as we imagine.
Well, the stuff that was stressing me out six months ago still is a nuisance. Brain cancer is still part of my life. Kiana's mom and I unfortunately have not made nearly enough progress in our coparenting relationship. I am not sure she’s let go of all that inspired her to leave and it takes only a cursory reading of this blog that while I think I’ve made some progress on this healing from having my brain surgery and having my heart torn, the healing on neither is done and both wounds probably carry some permanent side effects and scarring.
This became fairly evident two days ago when back on the running schedule, I had what can best be described as a strange experience. I kept smelling cotton candy on the run and worried that it might be brain related since strange smells is something I’m supposed to look out for. I was listening to Offspring and Nirvana and believe it or not couldn’t seem to hear their voice but was just hearing, of all things, Sesame Street inserting their own lyrics. About a half mile from the midway point in the 10 mile loop, I thought I might be about to have a seizure, went off onto the grass from the road, stopped my GPS watch (don’t want your time to be incorrect) and looked back. I didn’t see anyone and a few minutes later, I was waking up in the middle of an ambulance. Apparently, while I have no memory of this, my running buddies would gather around me waiting for me to wake up and the first thing I did when I came back to, was give them a thumbs up and a smile. I pray that’s always the raw version of me.
The ambulance staff and I would have a discussion where, like the first time, I was refusing to go. However, this time, showing experience I suppose, it was not about the fear of going to the hospital. It was about the fact that my current insurance charges nothing for MRIs if I go to the imaging place and charges a lot more if I go to the ER. I had to sign some documents and there will still be a bill but it will be less than if I had gone to the ER. Also, my doctor wants me to go the same machines so if there’s any changes they are driven by the brain not a different machine; in addition, it turns out the ones there are better than the ones at the hospital. The ladies at the MRI lab helped me out with my paperwork, gave me some crackers and juice. I had decided by then both what they thought I should do and what my doctor would say the next day, to double up on my Keppra. I had slowly gone back down to the presurgery level while marathon training without any issues (there was never any intention of getting off but I am a fan of less drugs). The fact that I was marathon training without issues made it seem feasible and I never want to insert more drugs than necessary. But let’s just say that Thursday’s event made it to where the doctor and I agreed on Friday that for ever and ever, I will be back on the immediate post-surgery levels.
Still, I went home that night and went to bed having left messages for both my neurologist and neuropsychologist. The neurologist has always let me be somewhat directive of my own medicine but buckled down on the amount of keppra I would take. My doctors and I had made a deal that Boston would be my last marathon, or at least the last one where I will leave it all out there. That deal I had second guess but after this it will still hold in both directions. I am not done exercising or pushing, just past the point of exhaustion in events like a marathon might not be so wise.
Another thing that was stressing me out six months ago was all that was going on with Kiana's mom. Because of all that had occurred, and because I want to do what’s best for Kiana but also hope that never means something like only supervised visits with me (in an ideal world it would be with two loving parents), I didn’t know what to tell Kiana's mom right away so I didn’t say anything Thursday night. It was less than helpful that I had received an email a few hours before this run telling me that Kiana's mom was going to be foregoing the Mother’s day weekend with Kiana because of another committment, that they could celebrate that on another day. I also was nervous about telling my job because of all the mess from 18 months ago. Still within 24 hours I had told them both without too much detail, deciding that keeping things open and honest was the wisest idea. How those will play out may take a little while.
Kiana's mom is going to treat mother’s day like another day. I was treating Thursday like another day and it came with a reminder that I had brain cancer and that seizure restricts me from driving for a while. Today is March 3rd, one year exactly since the surgery. I have a few things planned but most of them treat it like another day. When these reminders come, you have to take in that another day is ANOTHER DAY!