Friday, July 1, 2016

Free At Last?

I often start these blogs with a reference back to a memory if for no other reason than to test if that part of the brain has improved any. But not too long ago, a brain tumor survivor friend of mine, Matt Cotcher, had a Facebook post that said something alone the lines of "X number of years ago they said to me if the brain tumor doesn't kill you, the medical bills will. They were wrong on both accounts." I found it rather moving, inspirational even because I'd been bogged down with cancer and the financial mess that came from it all for the last few years. I'd tried to dismiss the frustration when it all seemed too overwhelming simply by quoting  my grandfather, "If it's about money, don't worry about it, we don't have any." But I had a slightly unexpected surprise this week regarding money that I can't help but share (with that said, I know money's a touchy subject so if you're one of the people whose sensitive about that conversation, the right time to stop reading is now).

There were some financial realities between Kiana's mother and I that got settled earlier last month. So shy of child support, there were no financial things left there. I hate owing money so anytime I do I try to spend any money to it so any extra money that has come my way I have just paid it to anything and everything I owed from the mess of the last few years. The goal and therefore expectation that it would all be settled by August 1st of this year. I found out I had cancer a few months after I had turned 30 and I was daring to dream that I could knock out all debt before I turned 36 on 8/8/16. But on Monday night I got home saying that it was all paid and no further payments were necessary and that in fact I would be getting back a slight refund soon (if you have a regular standing job, odds are you made more money today than that refund).

To say I was floored is an understatement, even if it was a couple of months early by one account, it
was a lot earlier by some other accounts that I had envisioned a few years ago. I couldn't believe it. In the age of oversharing I put it on social media with something not quite as eloquent as Matt but that I was glad to still be standing with no outstanding debt. I'd love to tell you I got a good night's rest but I was just too overcome with whether or not this was real that it took me a while. In fact I dreamt that night about how I finally slept in and woke up at 9:30 AM, then I actually woke up and it was 4:45 AM. Dreams are so much better than reality somedays.

But not that day, that day the reality that I didn't owe anyone money was better than any financial dream I'd had for quite a while. It was better than any birthday present I could have ever received and certainly better than any I should have given. It was odd and perfect timing in many ways. I had actually been interviewed for a podcast the Friday before about the National Cancer Moonshot Initiative. There was the head of Seton's Neuro oncology program, The Policy Director for Livestrong, and me. Two out of 3 working brains ain't bad and I wish more of my interviews were for the radio because this face was built for radio. One of the things in both the formal podcast but in more detail in a lengthier conversation was that was the struggle in cancer research now. There are some more personalized treatments but some of those can cost over $100k a year and are literally meant to only help one person... If that's where the brightest brains go then those people with less options may never get proper care.

The doctor was from Seton which is where I went for all my local things. I joked to him about how every time I see a Seton advertisement I say, "Oh I paid for that." I repeated a joke about how someone said that when someone gives that much money to something they usually get something named after them (we'll let go that's usually when it's a donation not a bill but whatever). He reminded me how lucky I was to get to go to Duke and that I had the resources to do so. We talked about his predecessor, Dr. Brian Vailiant, who along with me has now moved on to Austin Cancer Center. He had clearly talked to him before and he spoke of the difficulty of balancing the dance between being competitors in collaborations in the world of cancer treatment.

But I was impressed with that he was talking about the science but also expressing concern about the less fortunate being able to pay for it. It came as no surprise after him sharing that that he had made it a goal to help with one of Mother Teresa's clinics and had gotten to meet her and how glad he was she was about to become formally a saint. I'm not Catholic but knowing both of their approach to those people with unfortunate lives and illnesses, it made me think that I'm blessed to be traveling in the footsteps of those who have gone before and that the saints are still marching in to be helpful.

The policy director pointed out that the biggest reason people reach out to Livestrong is trying to figure out how to deal with the finances of a cancer diagnosis. It may be fair to say that too much of modern society doesn't deal with their finances properly but the biggest cause of bankruptcy in the USA is medical issues and the two most profitable industries are healthcare and insurance. If anyone thinks that's a coincidence...

The Livestrong leaders were in town for a conference that hadn't happened since I had closed their final session. I am not nor have I ever been a formal leader but I made sure to get a chance to hang out with most of them each day. They were once again being encouraged, taught, re-taught why
dealing with other aspects of cancer matter now. I loved what one one of them said that they hope Livestrong becomes the 911 of cancer. 911 connects you to the right people, there's a reason that band is constantly on my wrist.

We'd have lunch after it was all over with a few of them and we talked about finances. I know it's a touchy subject but when you're dealing with people who you've been there for each other to talk about pretty invasive medical procedures and cancer has robbed you of too many friends far too quickly, money is less sensitive. They asked about how I pay the bills and it's a complex formula (if you want to trade taxes anytime let me know). I mean there are times that I've gotten paid to talk about my hobby of running a day or two before doing that. I know that's normal for many people but I still haven't quite understood it.

But we also talked about how the bills racked up. I discussed with them some of the comments on that Facebook post about the bills being paid off. There were things like the fact that there were 5 different events in 3 different cities to help when this all started (I've volunteered for all of the organizations before or after it happened trying to raise thousands of dollars but is there anyway to pay back someone saving my life).   Someone had asked for me to give them financial tips (hey be unfortunate enough to get cancer and then be fortunate enough to win a marathon pushing a stroller doesn't seem like sound financial advice to me) so I'm not sure I'm very useful in that area.

Speaking of salvation, there were many Facebook comments about thanking God. If you read this blog, you know I've never once prayed to beat cancer nor its bills. I didn't quite know what to do with those and while I have faith that there is a God I don't quite know how the balance of the universe all works out so I've never been ready to say that God is the one that's gotten me this far because I can't counter balance that with the people who I've seen go far too early. Nonetheless, I am thankful to the rules and Ruler of the Universe and people in the biggest proportion I can possibly imagine.

I told them the stories actually about how it was to go from underinsured to uninsured when I lost my job to uninsurable (whatever you think of Obamacare, in Texas I couldn't get health insurance with a preexisting condition). I told them stories that show my stubbornness or stupidity or fortitude depending on how you want to spin it. There was one of my doctors who said his institution let him write off certain patients and that I could be one of them. Speaking of money being sensitive, I told him if he ever offered that again, he'd be fired as my doctor. He never brought it up again. I shared with them about the fact that while I was uninsured a place sent me 5 bills for similar appointments none of which matched each other nor were none knowable in advance. I finally sent a strongly worded letter talking about how horrible this was period. I don't know if it was that letter or the fact that I was in one of their advertisements that made it from that point forward I knew what the appointment would cost before hand. I told them about how the place that I had gone to for quite a while for my MRI's literally made more money from me after I got uninsured because the rate the insurance negotiated to was cheaper than the one they billed uninsured patients even if they paid it all upfront. My mom recently had an MRI for an injury and she was blown away by a bill which I get regularly and I joked with her that did you think there was nothing new at the house because I was bored? If you think wedding, race or senior pictures are expensive try ones of your brain.

There were some good jokes about how I should get massively into debt with a business so I could do it again. I joked with a friend about how I no longer needed a sugar mama and he said whoa whoa, you still need one of those and get me one too. There were questions of what I would do with all this extra money. If you want a short answer, almost everything in my house is actually older than Kiana (so over a decade) except for the things in her room. I've actually made a list of things to get done on or in my house for the first time in years because I honestly would have bet you I wouldn't be here today nor that I'd even have the possibility of buying them. It'll be years before it arrives; I'm not going to go finance anything but I dare dream about more than just sleeping in.

But I'm also committed to continuing to help be a fun and fundraiser. In fact this year will be the first time ever that Kiana gets to participate in both events of the BrainPower 5k and the Livestrong Challenge. So if you're reading this and feeling generous, you can donate $5 to her 5th 5k this year. Or she's also getting ready for her first bike ride with Livestrong (on that list of things to replace at the very top is getting her a new bike). It's the 20th anniversary and she's going to ride 20 miles so if you're feeling more like donating $20. Either way, let me put it simply in either one, you'll be helping people who need money more than I do.

Still through it all, I kept thinking of the trail race that I went to do shortly after the last blog. It didn't go great; in fact I had an ankle issue about half a mile into it but I'd do 18 more. The pain wasn't pleasant but quitting wasn't an option. I've long said that running is my therapy and how much I run and how long I run tells you how much I need therapy. Perhaps it's appropriate than that the very last race I would do before getting out of debt was this one. You see it exposed my weakness, I'm not a great technical runner and I don't have spatial orientation and I had to do it with an early injury. Perhaps even more appropriate was the race director himself is a therapist and this night time 30k was the hardest trail race I've ever done but like all good therapy I think my heart and head were better for it. I took a tough fall at miles 12 and 14 and walked some due to the pain after those but I turned it back on the last couple of miles, helped by a friend who was doing the 60k. But it also helped that the playlist which I had made almost all about light and night that a song which I repeated a couple of times came on to deal with the pain in the middle of crossing a pond and some water crossings. It was a gorgeous night and while it was only in short glances I'd take in some of the constellations that were gorgeous. I'd keep checking them out as I waited for some friends to finish.

Take that money
Watch it burn
Sink in the river
The lessons I've learned
Everything that kills me, makes feel alive...
Lately, I've been, I've been losing sleep
Dreaming about the things that we could be
But baby, I've been, I've been praying hard
Said no more counting dollars
We'll be counting stars
I'd used it before but it never felt more appropriate than during the race until a couple of days later when that letter came in. Then the next day a friend invited me to do the hardest trail run I've ever done. It whooped me and the workout also didn't go that well but I'm already signed up do it again next week. 
Today as the 4th of July weekend opens up I got the reimbursement check. It's tempting to frame it but I'm not quite that sentimental. But that night trail race had a logo of those who don't take a chance won't get a chance and I took the sticker from it and put it on my water bottle which during Texas summer gets plenty of use. I'm glad some of the past, at least financially is, past but the chase for freedom was never supposed to be a walk in the park right?  I'm going to keep taking chances. 

Saturday, June 25, 2016

Not A Father's Son

People have said I roll well with the punches... I don't know if that's true. I'm not even sure I'm great at getting up when some of life punches take me down. Like much of humanity I struggle with change. It was about 10 years ago in June of 2006 that I first learned I was going to become a father.

In simple frankness, I'd wanted to be a dad and also feared it. While life and my mother were kind enough to give me a great dad early in childhood, I didn't meet my biological father till I was 15. So I didn't know if I had the instincts or the qualities and perhaps no child should have to be put to the test of it. So in fact my childhood sweetheart and wife of 5 years at the time had stated to a small group of friends and our parents that we weren't going to have kids. She was in the middle of graduate school, I was going to go afterwards then we'd be old etc...

But then... a surprise happened when we were 25 and 24 respectively. She had been throwing up (me ever the sensitive husband had noticed but done very little about it). I was out on a Friday night and she was home after some social work group function. She called me and said, "Can you come home?"  In simple honest I said "Come on you knew I was going to be out tonight." In the entire history of our marriage that would have resulted in okay or come home, one of the two of us accepting the change and that being the end of the dialogue. She said okay, I went back to socializing. About half an hour later she called back and said, "I need you to come home." This was the first and only time that this type of call happened twice. I responded with that I needed to say goodbye and then I'd head there but while I'm good at saying goodbye I'm horrible at leaving good company. Almost an hour later, I got a call that said, "I think I'm pregnant." In one of my worst responses in the history of my life I said, "Can I call you back?" and hung up the phone. I stepped back in and said okay I gotta go I think my wife's pregnant and walked out. Apparently I said it with such an astonished look that people didn't know exactly what I'd said or if I was serious.

I got home, tried to bluff like I was ready to become a father, and asked how this could happen since she was on birth control. She was but apparently this thing had like a less than 1% failure rate but despite me being a less than adequate swimmer apparently not all of me was. I stayed up all night, literally all night, trying to figure out how to financially be prepared for a kid. Two weeks later my mom was in town for a conference from her job and we sat her down and she was thrilled. Oddly enough it was actually on father's day we told her, a fact I would not notice for years.

There is an old saying that women become mothers when they realize they're pregnant and men when the baby's born. I dreamed up of how awesome my son would be, how we'd play sports together, how I'd do all the dad/son things that I hadn't had in my early childhood. She was almost 3 months pregnant before she realized it and so it was only in the second appointment where we'd find our daughter's gender. I smiled and then thought... well there goes that idea now I'll live with only women, my wife, my daughter and my dog. So I took on an approach that life as I knew it was soon ending and I might as well enjoy it before the baby was born. I'd be gone multiple weekends before the child's birth, including 5 or 6 in a row for ultimate frisbee tournaments. I had some poker nights, went to more happy hours in those few months than I had probably the rest of my life combined. My wife was at many of those things though not at all since she was well tired and let's just say that type of approach during pregnancy doesn't do a marriage good.

Nonetheless, when Kiana Lys Leon was born, it was amazing. I'm a guy who can't handle bodily fluids but I was there and didn't pass out and cut the umbilical cord. Turned out life wasn't over. I took a paternity leave while  her mother went back to work for a few weeks before becoming a stay at home mom for a while. I read to her all the coolest books that the world had ever known. I played music and danced with her.

I got back to my life too quickly though and my wife and daughter were part of my life, nowhere near high enough priorities and I tried to balance it all not in the right proportion. Four years later, I'd be diagnosed with cancer and frankly took some of it similar to fatherhood, trying to figure out the bills. I went on a goodbye tour to all my friends in Texas and California thinking life as I knew it was ending the day of brain surgery. Some things changed and some things stayed the same, there was certainly far more change in circumstances than there were due to Kiana's birth.

I handled the communication even worse in marriage and that ended and somehow I've ended up with primary custody and I'm at almost 5 years of that. There's been stories of how I put off brain surgery to run a marathon and qualified for Boston, there's been stories of how I won one pushing a stroller. But the stories I'm more proud of, the ones that bring more joy are the ones of where I did races right next to her or got my mom to do her first half marathon at age 60, I was right there for. Or the one where my dad did his first 10k at age 70 and several other races but without exception did them all next to my mom, showing his wisdom at racing long before I did mine. There's something about keeping pace with the ones you love and the one whose showing love is the one whose helping you move.

So I recently went to Seattle for my first marathon since Boston of 2015. A year ago I hadn't done a
trail race at all and now I've done one of pretty much every distance (some far more technical than others). This would be my first trail marathon, the Light at the End of the Tunnel. My little brother would come out with his wife, and son and hung out with Kiana while I raced (without exception every race I've traveled for has had at least one of 2 things, somewhere I've never been or somewhere near people I care about, often both). Because it was on a trail that wasn't accessible there were very few spectators so it was really all about being in your head. The tunnel it referred to knocked out the GPS watch from being relevant. I got fortunate enough to where there a few guys fairly close to my speed and the competitive spirit kept me moving. But I think the real reason I got my fastest marathon ever at this race (3:00.09) was one thing and one thing alone. When Kiana and I do our races, I get her water and give it to her a little bit after the water stop (we learned early that her trying to get it from volunteers has led to her getting almost if not knocked over). She had said once long ago that she appreciated that a lot. At mile 16, my little brother, his wife and son were all along the side of the road taking pictures of us. I didn't see Kiana which worried me but then just about a hundred feet forward she was at the water stop. She had asked if she could hand me my water for once. There are almost zero race pictures of me ever smiling but I'm not sure anyone will ever catch a better one because I've never been sure which one of us is raising who but on that point I know who was taking care of who during that race. And that was the moment I kept referring back to when I struggled on the second half of the race.We went straight from there to the Seattle Zoo with my brother which we saw the entire thing which I think makes it be the day I moved the most ever in my life. But there was no way I was asking my support crew during the race to be bored after cheering me and both in spirt and in body, I am beyond certain it helped created a faster recovery.

We'd be back a few days later to do the Spartan race on father's day weekend again. Kiana kept asking if she'd get to do the adult one (something not allowed till kids are 14, an age Kiana magically has turned to twice before). I knew it'd be tougher in a Stadium race where you're far more visible than in the single track of trails. We tried anyway and got to complete it with Kiana destroying obstacles that grown men and women next to her were struggling with. I was with her side by side on some and in a safety spot in others. Expectations had been made clear as before that she had to attempts all the obstacles and do burpees if she failed at them. There was no walking allowed and no complaining. She fulfilled all that and more. Over walls, up ropes, on monkey bars, she learned that life is brighter six feet off the ground. All I can say is that my daughter is more than I could have ever dreamed of.

The next day at Father's Day she gave me the best father's day card I've received yet. Each year oddly enough it's the day I get the most greetings outside of my birthday. It seems from social media a statistical anomaly comes up every father's day that everyone has the best dad ever. I know one person, me, who is called that, it's inaccurate but I do have the best daughter ever no matter what everyone else thinks about their kid ;). Her all but life-size card had reference to many of our in-jokes including mine about how my favorite person is bob (a coming alive of the Bob stroller joke I've kept going for years). My mom was in town for the same conference and perhaps the world has come full circle and complete in that she helped her with the card and the first time I think I've ever received breakfast in bed on my 10th father's day. We also did our annual professional pedicure and hanging up our medals.

Just as meaningful of a moment was her smaller card she had made which now hangs on display at my house. I have no arts and crafts abilities, zero. But Kiana has them and I've continued to get her new things to try out and make. The latest is a tiny paper folding thing that came with ways of making particular objects but now she's been making ones of her own. She made one of me running and as the guy who always runs with music she threw music notes in there. One of those chocolates must have come open with sodium that got in my eyes. In the marathon, I had listened to a song that I heard the last time I was in New York when I went to see Kinky Boots, Not My Father's Son. It stood out to me for many reasons but made me think of having wanted a boy "with the strength of sparta and the patience of Job." Between the actual Spartan and the cards she made, she has shown both of those plus all the charms of a very feminine young lady. I've tried as best as I know how to let her breathe freely as herself in both the ways she's similar and the ways she's very different than me, to be profound enough to always live out loud, to never have to mirror what's not in her. I don't know why the universe has been so kind to me with this daughter but I am grateful.

As I said I'm not really clear as to who is raising who, so I am going to try to continue to learn from her  and hope she's learning from me. A year ago I had never done a trail race when someone tried to get me to go over to a lane. It was a trail race that starts at night and if you do the 30k or the 60k you're going to have to run at night. Immediately, from practicality or fear, I said a guy with spatial orientation absence and a history of seizures, said I'll do the 10k and be done before dark. I did and I won it but never did race a night one on my own. I raced one with Kiana in August and despite a few falls she finished it with conviction (we were always in a  crowd so I felt more safe). A year later I've won some and my fastest marathon is on trail but I still haven't done a night trail race. Well, that will only be true for one more day since I'm doing one tonight, a 30k where I'm guaranteed to be in the dark. I don't have a son and perhaps will never quite be an adequate father's son but I am going to try to learn from some of the fearlessness of my daughter, and that the best part of me is what she brings out to see. Perhaps running from my weaknesses and my fears will keep being further in the past and adapting to them will be where I'm running to.

Sunday, June 5, 2016

For the Run of It

I'm not very good at ceremony. I'm certainly not opposed to ceremonies, I just don't personally like to be part of them. Being the first in my family to graduate from college, I wanted to skip the graduation. My mom vetoed that idea quickly.  I rarely do birthday celebrations (the 3 in my adulthood have been 18, 28 (08/08/08) and 30. Medals on races that I do alone last all of a minute or two on my neck.

This of course is an oddity at best because I love being on the other end of things. Many of the races I've gotten to be a part of I've stuck around handing out medals till the last recipient, handing out happiness is what it feels like. There was someone I crashed into a race that came up and remembered that I was the person who handed them a medal at the first marathon they finished. There hasn't been a year since Kiana was born where I haven't thoroughly cheered commenting one more year of life. And in the last 3 days of school alone I was there 3 times as she had her last music share and two performances. I sure like to think I'm raising a princess but at some level I'm a little worried that she landed two of the leads in the 3rd grade drama class and the UIL drama club (they revisited two classics Queen Midas who turns everything into chocolate, very disappointed she didn't practice that at home and Princess Cinderella whose shoe problem was caused by the fact that she was a shoe size 87 1/2). And there might have been a parent who was happier or more proud of their kid than I was but I doubt it ;).

Some might see it as a bit strange to be doing all of this in the middle of MRI appointments and it's
results or perhaps some might see it as a way to distract myself from the suspense of those long 48 hours. I would like to believe that it's strange that cancer interrupts any of those things and believe you me, they weren't there to distract from cancer at all. In fact I would be highly disappointed in myself if cancer had distracted from my full focus on those events.

Still, the MRI happened. I finally got the courage to make a prick joke to a new attendant who found it hilarious. I did listen to the Disturbed version of Sound of Silence before heading there to get injected for blood and then to get reinfected with a medal dye that has all but once made me throw up and then washed out by saline. I sat and tried to think about the things that had gone right in there since cancer, not the seizures, not the surgeries, not the bills (those thoughts must have gotten magnetically pulled in there but I kept dismissing them). I thought of the fact that my parents had never ran a race before all this and thought of the one we had just done. This was one of my favorite races of all. My parents PR streak finally ended on it because my mom's been having a knee injury. My dad, showing the man he is, has never once done a race at his own speed and always done it right next to her. This was no exception. Kiana and I watched them come in and they were lovely. My mom used to try to come for my medical appointments but she has finally accepted that the image of her doing these races is a much bigger factor in the imagining in my head going well during an MRI.

And it wasn't just any race, it was one put on by the Austin Runner's Club. While I gave my mom bib #29, my dad #71, and Kiana #9 cause of their ages (and I took my #8), the race really is in it's 39th year. It had hurt a little with about a 100 participants and it was one my biggest hopes when this board took over that we could bring it back a little. When the race was done we had over 350 registrants. Kiana did manage to continue her 2 plus year streak of PR's. I had my watch set to the wrong settings so I could only tell at the mile markers approximately what pace we were at (didn't tell her that). I was hoping she would break 26 minutes and she ended up breaking 25 with a 24:57. She would also be the top fundraiser of the event with $650 towards Marathon Kids, a program that's just about kids running. Did I mention I'm not big on medal display? Well Daisy had medals this year and like all the ones that I've earned beside Kiana, it hangs in the living room prominently on display.

The results appointment was actually almost immediately after the last school assembly. Kiana got straight A's in 1st grade but missed a couple of days of school. In 2nd grade, she got perfect attendance but had one or 2 B's. In 3rd grade she nailed them both. I sat there and watched her glow at the results knowing well, if nothing else, I hope I've encouraged her that showing up is a good predictor of success and once in a  while you get to nail them both on an upward trajectory. I might have heckled a parent who upon seeing her kid get one of the awards that Kiana got asked, "oooh what did you get for that" I responded immediately with she got to have a chance to learn more. I hope Kiana keeps much of her motivation in the internal reward not just the external one.

So those were the thoughts going through my head during the MRI. When I got to the results appointment, I was in the waiting room looking at the magnet on the table where I was filling out forms: "Treating cancer is caring for people." The doctors I got are great at treating cancer if that's the definition.

I got called in and weighed and pulsed and asked the traditional questions. I honestly didn't remember anyone in the room but they all asked about what races I had done lately. Then I got put in the next waiting room. It was different because it had a window with a  great view of the University of Texas. I don't know if the other ones didn't have windows before or just not much of a view but somehow it just felt right to be looking at a place I'd given speeches to doctors, pre-med students, raced alone, raced with Kiana. It sounds silly but that just was a comfort in its own way that before I got an internal view of what it was inside my skull I got to look down lanes with memories, to be reminded that I got to choose life with a view. 

The doctor came in and said my scans showed everything stable. He was wearing one of his signature bowties (bowties are cool!). We went over the scans from this angle and that angle, with contrast and without contrast. He went over realities that in the best case scenario they would have been able to remove all the tumor but that in my case my tumor was most likely dormant and may well wake up (where and when the mystery). But he talked to me about the latest phase of where brain tumor treatment is at Duke (coincidentally I was wearing a Duke jacket) with optimism but with reality that both he and doctors at Duke, Md Anderson had seen phases that got past phase 1 at trials and petered out in phase two or with a larger population. This was and is still only being used experimentally on people who it's aggressively growing but who knows there may come a day when it's able to used on people who have dormant tumors and come out with no tumors.  It was a cautious tone that said don't hold your breath but don't give up hope. Did I mention Dr. Vailiant rocks?

He then caught up about what races I had just done. We did some memory tests (I passed 2 our of 3) and he was impressed that I recognized we were in a different room since my spatial orientation doesn't exist. He thought it was memory but when you've been in enough medical rooms and waiting rooms and realize they have an entrapped feeling, there's no way that window with that view doesn't stick out in your heart of hearts, isn't that where the best memories are forged? He talked to me about running with his kids in a double stroller. It's funny he always tells me about his running and always prefaces it with "I'm a runner, not as good as you." I've never done it but I'm tempted to respond with something witty like "I have a brain, not as good as yours" but I always think of it after the fact not at it. 

I told him that I'd been re-elected as ARC president which led to some jokes about the current state of getting elected president in the US today might not be as tough as it should be (neither of us said who we voted for so far but in case you're wondering, I voted for Pedro). We also talked about how aging is affecting my running, that I'm still hitting my times but recovery is getting harder and for the first time ever in a medical appointment he stated the obvious, that time catches up to all of us with aging and death. It was not a deep philosophical remark but it was somehow refreshing to hear from a guy whose monitoring my life. 

But I got to answer a question which had taken too long to answer. Back in December of 2014, he had talked to me about the New York marathon, knowing my results in advance because he had live tracked them. He said what race do you have next and at the time I didn't really have anything on the calendar. In June of 2015 and in December of 2015, he had asked similar questions and gotten similar answers. Perhaps it's coincidence or perhaps it was subtle encouragement to look further than to the next visit to him but he'd be saying it me for the last 4 MRI's and never had an answer.

It takes a cursory reading of this blog to realize I race and run a lot. I've long said running is my therapy and how much I run and how long I run tells you how much I need therapy. In fact in my public speeches at races, I say "I never know whether I'm running to or from something but I keep running." However, a simple rule in most of our lives is if our words and actions contradict each other, our actions are almost always the ones telling the real truths. I mean I put off brain surgery to run a marathon but that's not where the pattern ended. If you look at November of 2014, May 2015, November 2015 each of them kept being the month that I did more races than I had ever done before. The MRI's feel and have been treated like a game of russian roulette where someone else is spinning the wheel and who knows what is pulling the trigger. So I've ran hard before each of them and then the month immediately after them are the lightest... some might think that's intelligent recovery planning but that's just not true. It was me afraid to make a commitment thinking that it was going to take time to get my affairs in order. I mean I did literally 3 races in 4 days before the last one. 

I did it different this time. The week before the MRI's I registered for multiple races, 4 of them within the next 3 weeks, a 5k, a marathon, a Spartan and my first night race. There was a further one out, the St. George Marathon, where I'm a speaker and originally I had plans to go to the Grand Canyon out there on my own but before stepping into the doctor's appointment I said that I was going to Zion with good company cause the Grand Canyon can wait. I dared to dream for the first time beyond the MRI. Somewhere between now and the next one I hope to get the courage to sign up for a race beyond that one. 

I sat in my car, relieved at the results and breathed thinking about reality, promise, the past, the present the future. And for some reason Emily Dickinson came to mind, I realized death will eventually catch up. However, I was grateful that I hadn't stopped upon becoming so keenly aware of my mortality. I combined the two thoughts with a nod and realized that I had not stopped for death, it has yet to catch up to me. I didn't do any great ceremonial approach upon finding the results. In fact after the last day of school, Kiana and I just went to the playground and then afterwards we did some hill repeats. 

How will life go, probably as well as the races have, some good, some okay, some great, some tough? But what can I say, it took me a long time to learn that the coping mechanism should get me not just to medical appointments but through them. It won't for me ever be primarily for the medals or even the times though I doubt I'll be completely not competitive. So until death do us part, I hope I keep enjoying life and these races for the entire run of it. 

Sunday, May 29, 2016

Disturbed Silence

Someone recently pointed out that I look tired and I responded with that they were correct, I couldn't remember the last time I was tired. I reflected on that for a little while and then realized I've never been this tired, I have never ever in almost 36 years of life been lacking this much sleep. It isn't because of my endless pursuit of races, it isn't the the places I help or trying to keep up with the child with endless energy that the angels named Kiana. And despite the fact that I'm about 36 hours away from an MRI, it actually has nothing to do with sleepless nights caused by worry. 

But it is in fact because of sleepless nights. Austin is in the worst storms it has been in while I've lived here (it's been about a month or so of almost every night) and I have a dog who is very afraid of thunder. During the day, I can just turn on the stereo or TV loud and leave the lights on and she handles it fine. But at night, when Kiana's asleep  I have to take a different path and the thunder in the middle of the night gets her shaking and before long she's "petting" me and she'll continue to do so until I return the favor. At first I tried to pet her occasionally and get some emails but enough nights of sending emails at 2:00 in the morning and reading the responses to them made me realize that was a bad idea. So a guy who doesn't watch much TV actually joined Hulu for a month, watching it on my computer and I've gotten through the entire 1st 2 seasons of Empire based on a recommendation (whatever else the show is it has music bursting out from the characters so it's at least entertaining that way). I've downloaded only one song but it has made the nights a little shorter even if they aren't very restful. 

But I've used it to settle long neglected to do lists which allowed me to re-organize my calendar. For some reason Tuesday's MRI and Thursday's results, not in any bolder or louder format than anything else, just kept popping out. And just by the nature of the industry and it falls after a holiday weekend, I got a reminder from the imaging place and from my neuro oncologists office. For some reason getting it approved by insurance had fallen through the cracks so they made a few calls and suddenly instead of two reminder calls there were four which while double seems like infinitely more... Let's just say some of the last few nights it would have been helpful had there still been some episodes left because puppy got petted in silence. Well, it was not silence per se but there was no TV to distract my mind wondering about my brain.

I have a little soft basketball that I shot a few dozen times to distract myself but it's a nod to Duke so I kept going back to the morning before my brain surgery. I had snuck out the night before the biopsy to go on a run with an IV in my arm, I'd put off brain surgery to run a marathon. I tried to get them to let me leave after I had checked in for brain surgery but they said no (the other two I had company and this was me in isolation mode trying to do it on my own, my typical style). No one was allowed to stay in the room with me at that point and I had woken up before my family had arrived. So I went and walked up and down the halls and the floors and the stairs and anywhere, anywhere that wasn't a hospital bed. I walked for what seemed like hours, wondering why they didn't just have drive-through MRI's and brain surgery for early risers like me. That morning there was also an MRI pending, the last one before they would drastically change the way it looked, the day before the scar would be carved. Perhaps in hope, perhaps in fear, perhaps just as a distraction, I took in the interactions in the hall. As they would be at any medical place, some were clearly in relief, others serious worry and a moment that I can only dare dream of will be me. I didn't know what they had heard but an older man saying to his lovely wife as he hugged her with conviction, "as soon as we get out of here you can have whatever bottle of wine to celebrate." I stood there just absorbing their happiness.

But it was the only place I had actually stood and coming out of one of the rooms that I couldn't see in too was a song playing in the background. I might not have absorbed it but it was one of those instantly recognizable classics, Simon and Garfunkel's Sound of Silence. It was about then that I headed back to my hospital room and I'd get picked up for the MRI.

I've never quite made peace with whether that was the absolute best or worst song to hear before sitting in that machine before brain cancer surgery. I mean at this point, I was coming to full grips with that they were about to take a piece of my mind. I joked with my ever present humor coping mechanism to the attendant that maybe they'd realize they'd been mixing up my brain with other people and there wouldn't be anything in there so we'd cancel the surgery. I'd had friends who had athletic surgeries and had marked up the correct leg and the other one with "not this leg." I'd thought of doing something similar but never came up with the right idea. But there I sat the MRI, a place with loud whirring and lights, and the song played itself in my head. 

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

It's a strange place, an MRI machine. They give you earplugs to drown out the noise and it's still ridiculously obnoxious noise so what's it like if you didn't have those? During all that sound, I wonder if I couldn't use someone petting me. But perhaps it's comforting but anyone doing so would likely have as much control of what's causing the stress as I do of the thunder and lightning. Perhaps this is why I have my Grand Canyon idea so that no one's losing any sleep trying to comfort me over the electricity in my head and the thundering in there being out of control. Thunder storms eventually die down but cancer sometimes gets you to be the one who dies down.

They strap your head so it doesn't move, isn't cancer  and that brain tumor entrapment enough? They said back in 2010 something that I will likely not shake until and unless I beat it, "we're not going to be able to take it all out. Where medicine, we're just trying to get you to 40" when I had just turned 30 a few months before.  And I'm at several years of stable MRI's and 2.5 years without seizures, but that vision that was planed in my brain still remains. 

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

I have gone to almost all my MRI's alone. Kiana has wanted to go to to a couple and I woke up in ambulances and there were people there for those who had been there when that happened. But there are flashing neon lights. I'd never made the connection before but I wonder if they were designed to copy lightning and thunder, our own way to conduct electricity in nature. And it's cold in there, I don't know why. But without fail no matter when my MRI is they always put a warm blanket in there with you. I am sure it happened but I don't have any memories of being tucked in at night as a kid but the people conducting them always do so. Maybe I'll finally make a joke about them being good babysitters.

Oddly enough the MRI machine itself doesn't scare me, just what it might result in. What does scare me is the needles for the bloodwork before hand. I've ran under barbed wire and done many crazy things but a needle always makes me nervous. I lived in London for a summer and on more than one medical appointment I've been tempted to make a joke before the needle work about how "I hate bad pricks" with the double entendre ended. But I figured if they are annoyed with the joke or laughing at it, either may result in a less than desirable brick. 

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence

I generally close my eyes during these things but neither eye lids nor earphones block everything out. So I try to do it mentally. During that pre surgery one, I was envisioning the marathon that I had put off surgery for. All of the people who had cheered especially at the finish line, on that one my first time qualifying for Boston. I've visualized other races since then and while for a while it was looking back at recent races since almost without fail every MRI had a race shortly before it, a distraction point or another focus point, I'll never really know. Since becoming ARC president, I've made it after events we help out with since if results are bad, I'd like to have gone out having completed something. But in that naked light of my brain I see the people cheering go random stranger go. Imagine the friends that you get much too such short of moments with, a reflection that is a much better slice of life and love than any brain MRI could ever show. 

"You do not know, silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed
In the wells of silence

There are people who wonder why I think it might change when it's been stable for so long. I try to work off the statistics that median survival without surgery is 4 years and with is 7 and I'm at five and a half. I also try just take the human approach. Emotionally I never asked why me the guy who'd never called in sick, who'd never done any drugs who exercised, was the one going through two years of appointments.  This is a cancer that has no known dietary, genetic, lifestyle or environmental components I've made too many friends who had the exact same cancer and because it wasn't fully removed, it eventually grew (I've made exactly 1 whom it never grew again). One of those guys literally beat me at a race at Duke two years ago, we took 1st and 2nd and he passed away a little over a year ago. Another had been stable long enough to where she and her husband had decided to think about having kids but it came back as stage 4. She went through experimental treatment and is doing well but decided not to risk leaving children motherless, a decision I understand. 

There is actually a cover of the Sound of Silence I heard recently by a band whose name is Disturbed. Still, if the weather prediction holds, it's going to be storming all week again so there will not be any rest while waiting for the MRI or it's results. I imagine I'll be listening to it some this week and have mentally committed to it being the last thing I listen to before stepping into that damn machine. I don't assume it will be stable or go bad. I'm not sure which is the more absurd side of the coin that the fear of death is illogical or that the fear of death is what keeps us alive. Acknowledging the actual emotions as opposed to just the "prescribed ones" is a healthier approach to me. I don't think we were designed with those emotions to ignore them. 

Nonetheless, between now and Tuesday, during the appointment where I prepare to get into the tunnel and see the results, I've decided to look forward. I actually haven't done a marathon since Boston 2015 but literally with less than 3 weeks and not having done any long runs since late March/early April, I signed up for the Light at the end of the Tunnel marathon in Seattle two weeks from Sunday. Kiana's coming with me and my little brother's coming to cheer. The last time that happened it was the first time I did Boston so who knows how the tumor in my brain is doing but the family circle is still unbroken. And I'm out there putting one foot in front of the other not to set some record but just for the run of it. 

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said “The words of the prophets
Are written on subway walls
And tenement halls
And whispered in the sounds of silence”

This will be the 2nd MRI in a row that I choose to skip taking a CD home as a copy of it. For the rest of them I've taken it and analyzed it as if I had some clue how to read it. It never caused any relief nor gave any indication so it was an exercise in stress and futility. So if nothing else I will stop trying to be one of the people who bows and prays to this MRI neon god we've made. That race I've got coming starts with 2 miles in the darkness but light visible very small until you're back in the light. I hope that I'll be singing happy songs  So here is hoping that the words of the prophets that are whispered in the next two weeks are the ones from Ecclesiastes. 

A time to tear apart and a time to sew together; A time to be silent and a time to speak.

We did the tearing apart and sewing together a few years ago. Here is the MRI is enough of a disturbance to normal life and that dealing with my tumor goes back to being more silent and that this blog is a rare instance where it gets a time to speak. So here's hoping in a few days, all storms calm down, and like a bridge over troubled water, I will lay me down with an eased mind.

Tuesday, May 24, 2016

The Song That Runs Under The Credits

People who clearly have too much time on their hands have asked why I'm blogging less than I used to... The truth is actually immediately under the Picking Up A Hitchhiker blog title, An Incredibly Raw and Uncensored Blog of how a Guy copes and hopes with brain cancer and life changes. Somehow life has been kind enough to where for a good share of life, brain cancer and life changes have been fairly minimal for a while. There's an MRI next week which has started to and will invariably shake my nerves till the results (and I hope less, not more after I get them but I never assume things are going to go well).

But there have been pleasant little reminders of life that keep me grinning. For a guy who has memory problems I should take advantage of facebook's memory features of on this day x number of years ago. However, since I'm a guy who tends to look forward constantly and so rarely back, I miss it most of the time but yesterday it popped out at me because of a joke I made. I had just started driving after the second time I got restricted (it last about two years, the first one had lasted about six months when this all started). A friend was excited that because of a new job they had gone almost 2 weeks without refilling their car, I told them I had gone two years. But now, NOW, I've been driving for almost two years.

I hope next week's MRI doesn't change the relevance of cancer in my day to day life next week. But right now the relevance of that the tumor and scar tissues creating seizures is under control. So now I am not riding a bicycle because that's my main mode of transportation but because it's fun. Livestrong day was last Friday where I had to pretend to be a little cooler and use hashtags in my instagram of #livestrong day and #bandedtogether. I looked through some of them and some highlighted just the band and I understand the power of symbols which is why it stays on my wrist, a reminder. But my picture was me hugging Kiana, the girl who it helped me livestrong with and band together and I thank them for many things but above all the cancer and relationships class where I learned the biggest tenant of my life, work on the relationships you want to keep. In fact this year, by virtue of the custody calendar, it will be the first time Kiana's with me during the Livestrong challenge so instead of riding 100 miles like I have 5 times, I'll be biking 20 next to her. There was a time I skipped the Austin marathon the 1st time to go through the finish line next to her doing her first 5k. That race was more meaningful than any including the ones I won behind her in a stroller. I dream that's going to be true as well for her. Plus with the way she's been growing, I'm fairly sure she's going to get a new bicycle before the ride and certainly will...

The electricity in my brain isn't causing me to lose control of my muscles or lose control of my brain. It may take a maximum twice a day dosage of pills with some side effects but hey that's life... or at least that's avoiding death. So the voltage in my brain isn't running wild, so I run in the wild. Another brain tumor survivor, Sara, talked me into doing a trail race last weekend with all of a few days notice. I did the single loop 10k. She was doing the 30k which was a triple loop that started half an hour earlier. Still I did her 3rd loop with her after taking 5th in my race. I put off brain surgery to run a marathon. She's coming out of a tumor and now in a later stage and age in life (I mean she's 29!) she's signing up for her first ultras, taking on tougher challenges. She likes to say I'm inspirational but she's doing harder stuff than I am and the one talking me into things. Let's just say that was the conversation and experience that finally got me to sign up for my first 30k trail race which is going to be at night. What could possibly go wrong for a guy who has no spatial orientation running at night on a trail? She ended up taking 1st grand masters. Brain tumors aren't making us pause.

So speaking of grand masters, why I blog less is because there's less things where my own cancer is relevant on day to day to stuff and I start to dream a little further out. It's like chess grand masters where they think a lot more moves in advance than beginners. I'm not chess grand master but I am please to report that the chess club I coached all year this year swept the competition. My daughter's school took 1st place in every grade (2nd through 5th) and the top 3 spots in 2nd and 3rd (Kiana took 2nd)! That was the only event that any school did that at. A parent who was there tried to get me to take a picture with the kids (I passed and let the kids just be the ones in the pictures). But the parent added you must be very proud of what you did... that is of course absurd since I didn't do it, all I did was coach those kids and pace that grand masters winner. The potential was always inside them, I just got to be beside it and witness it. That's a privilege.

The mind problems are still there, the damaged brain hasn't healed but hopefully remains stable. But in the age of digital clouds, I can make notes on my computer that show up on my phone or I can log into anywhere where the internet exists and I get to cheat that damaged memory. Other people call it compensating... I still don't know if its not cheating. But we hold on to what we can and try to do good things with it. Speaking of memory problems a few days ago was the first time ever someone didn't put some cash after Kiana lost her tooth. It was one with a metal filling on a stormy night so I said the tooth fairy was trying to keep herself safe so we wrapped it extra carefully and Kiana got her biggest gift ever from the tooth fairy... I don't know if that's teaching her that guilt trips can come with exorbitant interests rates.

I'm still helping out with multiple cancer causes but things like chess club or getting re-elected as president of the Austin Runner's Club (would I have won had I been running against the current US presidential candidates!?!?) helps to focus energy elsewhere as well. The two balance each other out I think because the cancer events help me appreciate everything I've got going and that I'm still standing and the non cancer events help give me even more energy to give back. All of our ARC events and membership have grown because we have had great boards with ridiculous focus and energy but like everything I'm currently working or part of, I wonder how I got so lucky to be part of such good teams? My constant joke (but probably the truth) is that it's because only really good people will put up with me.

So that's why I blog less because the hopes and copes of cancer are more normal to day to because they are less relevant. There were 2 years straight of medical appointments and now it's 2 years straight of driving because the driving restriction was taken away. There were a lot more medical bills than I could have imagined but assuming life stays all right, I will actually get out of all the debt of the last few years by the end of this one. The blog title today is actually from one of Kiana's kids movies, Jonah. It makes fun of the fact that the credits song rarely has anything to do with the actual movie:

There should be a rule that the song under the credits
Remotely pertains to the movie’s basic plot
That rule has not been made so for now we’ll have to say
Hey! Hey! Hey hey hey hey hey hey...

So mom, when you're worried about why there's less entries, it's just simply because I want this blog to pertain to the blog's basic plot. So here's hoping there keep being less entries, less worries, and more life. 

Monday, May 16, 2016

To Infiniti and Beyond

“When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams — this may be madness. Too much sanity may be madness — and maddest of all: to see life as it is, and not as it should be!” 
―Don Quixote

There is an apparent pattern of madness in March in my life for the last few years. In March of 2011, I had brain surgery at Duke during official March Madness. In March of 2012, I woke up in an ambulance again a few days after my first post surgery marathon. In March of 2013, I won the Gusher marathon pushing a stroller. In March of 2014, I went back to Beaumont and won the half.  In March of 2015, it was my first time to go to a new country since before brain surgery. In March of 2016, I got to be part of March madness, be part of a fundraiser against Cancer with Infiniti with March madness pick. 

Like any previous March the full effect isn't known immediately but sometimes it's not too far down the line you start seeing some where things are going. Those of us from Coaches vs Cancer got to be present for the check presentation from Infiniti to the American Cancer Society. It would be over $700K raised. For almost all of us who came, cancer was a part of the past and most of us were from Texas, so it seemed only appropriate to give this as we hung our hats in Tennessee. 

We would have a formal dinner with a smaller crowd where there would be some laughs, some impersonations of each other, some memories. Mike Thompson, the friend who had been a huge part of the reason I ended up getting to be a part of this had the bright idea that we should all share a little something in a more formal way. He started it and it was great to listen to his style. Each person would share things, some more simple than others, others more eloquent, but all human, honest, grateful to the cause, to each other, to the future. Quite a few of my teammates would say they were thankful for getting cancer because of the perspective, the appreciation it gives you for life, for love and loved ones. Just by sheer coincidence of sitting arrangement I was going to be the last survivor speaking.

I've said things in the past about some of the lessons I've learned from the cancer experience, some of
the mistakes and wise moves that were facilitated by that, some the strengths and weakness highlighted by that keen awareness of my mortality. I've said that I was glad I got cancer because maybe I wouldn't have picked up some of that progress without it. Perhaps because it's been 5 years of pills and medical appointments and bills and worries, perhaps because I dare have faith that life will teach us lessons one way or another, in simple honesty, I have said many times that cancer was a good wake up call, a good thing in my life but if I said things like that these days I'd be perjuring myself.

So when my turn came to speak, I remembered of all things, a place I volunteered in high school. Now I was one of the oldest in this young adults basketball event so I still remember the days pre-internet and personal computers. Back then I used to volunteer for an organization called the post polio syndrome society. It was people who had to deal with some of the effects that had come from having polio years or decades before. I'd type out a newsletter and format it and it would get distributed to people who had a range of neurological issues because of a disease that was no longer active in their life. I was 14 learning about a disease and its side effects, its long term effects, and the privilege getting to know it's survivors. It was a bit strange period much less at that age because well for all practical purposes it was a disease that no longer existed but here were lots of people still dealing with the aftermath, the long term effects.

I thought of using one of my standard quips from when I get invited to speak, it would have been less nerve racking that way. But I said what I hope that there will be a generation not far removed from my daughter's where cancer is just something like polio, something only the older people know about because it happening while once common is all but extinct. Perhaps in due time only a memory even for them, something that we educate people about the past.

The next day we were there at the formal presentation at Infiniti headquarters. This was far more formal with Infiniti talking about how this had led to different people reaching the website and inquiries about the brand. My favorite part of the Infiniti presentation was that the idea came late and they originally said well that sounds like a good idea for 2017 but someone dreamt big enough and they went along with it and it happened. It was dreaming big that allowed all of us to step in to the stadium where the Final Four would play and we'd get to do it not just as spectators but as athletes and advocates. The coaches spoke in suits and ties with my coach actually giving a nod to what I had said the night before. I have to get better at picking where I sit because they announced we were speaking again and I happened to be where I'd be the last one out of the survivors to speak. I said thank you again with the knees shaking but somewhere the heart sold or at least solid that a room full of people like this will continue to make cancer less and less relevant to the modern and future ages. It was tempting to quote one of my daughter's movies that the work they had done, the money they had raised would help people at "Infiniti and beyond" but I am guessing that they've heard that joke too many times but hey this is my blog so I'm sticking it in here. But in all seriousness, I think what we were all able to be a part of, no one in that room will ever know the full positive effect of.

A few days after I got home to see my doctors again on 60 minutes. When I was on E60, they interviewed my doctors but they didn't end up in the piece which was disappointing but it was good to see them there. The 10 year survival rate of my brain cancer is 12% but at Duke it's 18%, thus as a poker player, I'll definitely take 50% better odds even acknowledging they aren't great. Still, I believe the universe balance itself out in the end and somehow appropriately, and somehow at Duke those doctors and that institution that I've helped raise money for specifically, have found a way to take the polio disease and insert it into the brain and help patients who typically have a short time left now only having scar tissue and being cancer free. I have an MRI in a little over two weeks; there's no way to not be nervous because I'm not cancer free but perhaps even if this thing has grown, there's an option once again at Duke that there isn't in Austin (I went there for many reasons 5 years ago but one of them was no doctor in Austin would operate and were recommending others out of town). As the sign in the cancer center says and is echoed in my home, at Duke there is hope.

Perhaps the moment I liked the best in the 60 minutes was one of my neuro-oncologists, Dr. Desjardin talking about how she failed a patient because they hadn't gotten this far when he was going through brain cancer. His wife disagree with that assessment because they had helped keep him going to where he was able to be at both of his daughter's wedding and meet his first grand child. With MRI's looming, I can try to pretend like I'm not nervous but that's not true. But I find hope, comfort in that the races I did once behind my daughter in a stroller I get to do races next to her these days. Life is after all about love and connection isn't it?

Perhaps there's the balance of it. Polio used to damage a lot of people and has been made virtually insignificant. Than someone at Duke got clever and turned around and utilized it to fight cancer. A few of us cancer survivors have taken the lessons from the disease and utilized it to get better at life and positive connections. A car company helped us cancer survivors in the present and donated to research that will hopefully make cancer also irrelevant and perhaps someday someone really smart will turn cancer into something that fight's another disease. I hope and trust that this Coaches Vs Cancer was a step in turning life and love in the right direction and that it goes from Infiniti to beyond.

Thursday, April 28, 2016

Blood Thicker Than Water

I have a slight confession. There are many things I have hated about the cancer experience, absolutely hated. But one of the pluses, a tiny one is that because I now have cancer I am not allowed to donate blood. See, I have the universal donor type and so before all this, at my employer's they had a van come through once every three months. I had done it twice in college and both times all but passed out, turning a shade of green. They had encouraged me then to do it regularly since my blood could be used so much... I never passed up an opportunity to do so that came up but I never sought one out but at work it came every three months, so I did it each time. Still after the diagnosis came up, there was this instruction about no caffeine or alcohol (I responded with the joke about rum and coke, don't they cancel each other out). There was the one about no more soccer (finished and won the league I was in). Then there was the one about never donating blood again and I all but smiled (might not have been that reaction had I known how many needles I was going to be taking in over the next several years; at Duke I stopped counting from check in to surgery the number of pokes; unlike on Facebook they were only annoying and nothing good came out of it!).

So when I had a medical appointment this week that was theoretically just a check up, I was less than happy because it seems a rare appointment comes without blood being drawn. That thought got bypassed when I arrived for the appointment because my doctor had moved. She was now in the exact same complex as Kiana had been born in. I didn't know if that made perfect sense or was non sense or was some zen circle of life type of thing. I've been in many medical complexes in the last few years but I was in the exact same parking lot I had once put in Kiana's first car seat.

There was long conversation about general states of health and medication management. They had asked if it was okay if a medical student watched the appointment (I get that asked at a lot of medical appointments; maybe that's true for everyone or maybe the doc goes man you gotta see this crazy case. I always roll my eyes and say we've had cameras in here, I can handle a medical student). I honestly don't remember her name and she was off to the side but perhaps the reason I like it is because there's a fresh audience for my jokes of someone whose not used to the irreverence that I treat medical appointments with; she laughed more than anyone else in the room. When we talked about the state of my ear for some reason my doctor said I had "handsome ear canals." That's a part of my body I've never been complimented on by the way. We talked about the state of my feet in which well if you've ever wanted to give me a gift a pedicure for each toe would probably only get me halfway there. I joked that apparently any girl with a foot fetish would never be my type but those girls that like ear canals... I mean obviously it means I'm a good listener ;).

Still the conversation ended with that there would be unexpected and more thorough blood work the
next morning. I had to re schedule a run and a meeting because of it and the medical staff said I had to do the blood work fasting, so no breakfast. Isn't that just asking your patients to get hangry? I arrived there and never know what to do with the fact that I am almost always the youngest person in the waiting room. That was definitely true by a couple of decades this time. There were two guys there, one very quiet and one who had no capacity for keeping his thoughts to himself. It was a fascinating distraction because he clearly said everything out loud. The thoughts he wanted to share he'd say out loud to himself and then to the person who he was directing them to. I didn't make much conversation with them other than to find out that they were veterans who had stayed friends after their service. It's times like these I wish I knew a little more about military tattoos. The one who had provided the ride seemed like the one with more health issues, breathing in and out with the aid of an oxygen tank. Finally he said to himself and then to his friends "we've been waiting for an hour and 15 minutes; this is dumb. I'm going to go home and sleep and you call me when you're done and I'll come get you." Almost word for word, he directed at his friend who quieted him down and asked him to wait which he did.

There was a problem with the insurance processing computer so that was the hold up apparently. I'd been there almost an hour and a half before they called my name. I thought that meant they were ready for me but all it meant was I had finally been put in the system and then they handed me that thing that vibrates whenever it's called. I've long ago made peace for waiting during medical appointments, that's the name of the room after all but this was atypically long. I hadn't brought anything to read or do so I just kept absorbing the room quietly, some looks of fear going in and out, others trying to be stoic, others of relief.

I was there to test my cholesterol primarily along with other possible side effects of the medication. It is a dumb dumb thing to google side effects of medication while you're waiting for blood work because you start reading because you read the honest and true, sometimes exaggerated sometimes played down stories and all of a sudden you're deep in the rabbit hole. People who were athletes like me whose cholesterol went up prematurely or unnaturally (the nurse the day before had said they had seen it spike up decades earlier than they did in people without the medication). They end up having to take medication to mess with cholesterol that reduces their athletic ability which makes other side effects worse. The day before the medical appointment I had run 10 miles on a Tuesday (I've never ran that long on a Tuesday) just continuing to remind myself that the grim reaper catches up to us all but I want to make sure to make him work for it. Was I projecting or receiving feelings from the people around the room, I don't know but I kept checking in on those two friends who had served together and I think were now the definition of blood brothers.

Perhaps it's because I'm afraid of needles. Perhaps it's because the wait was so long but somehow as I
waited I was lucky enough to receive an email that the pictures from the Spartan Super were up.
See Kiana had done a Spartan Super. It was the most ground she'd ever covered in one day, a little over 8 miles with lots of obstacles. Officially kids aren't allowed till their 14 on there and so anytime anyone asked how old she was, I said she was 14 for the day with a nod and wink. She always answered 9 honestly and gave me a bit of a glare. Our deal was that she would try all the obstacles by herself before I'd help. She would take help in almost none of them. I'd see her pull a heavy sled entirely by herself with an adult woman unable to do next to her. I'd see her jump down an 8 foot wall without fear (which scared the crap out of me). I'd see her go in water that was shallow enough for most adults to walk through but that required her swimming. I'd made her do her own set of 30 burpees for each obstacle she failed the same way I had been made to. I'd seen her pass adults who were impressed; one just like her 10k 2 weeks previously called her the exact same thing, wonder woman. I'd seen her panic before jumping over the fire and even as I tried to get her to do it on her own realizing she wasn't quite there and scooping her up and jumping with her at the end. Still in my book she had always been super but now she had a medal that made it official. The official photographers hadn't caught it all but caught enough to where I started looking through some of my own pictures and some of the ones grandma had caught.

For a guy who posts too much on it, I'm actually fairly critical of how often we miss the company in front of us to share our life with other people who aren't there so I try to put my phone away more. But perhaps, a medical lab room is the right place to go through social media and remember not just why but who has kept you alive. There were pictures there of the people who had joined us from the Spartan, once again the friend I've had the longest who I joined in Houston though she was separate from us at that point, I was keeping Kiana's pace. But almost step for step joining us was Alex Street, a friend who had flown to Duke while I was there and helped me and my mother during my last appointments before I came back. This is one of those friends from that time who had watched me with staples in my head and IV's. He is absolutely a blood brother. We have done other events together before but it felt appropriate that someone who had been there for my brain surgery, my mid life crisis was now joining Kiana and I for a little mud life.

I reflected, remembered the Spartan some more. Kiana did the kids one after, looking and feeling exhausted while doing one more mile than I would. To me that was actually the more impressive moment as she went over one of the kid's wall she saw someone else struggling and reached out and grabbed both their hand and feet and pulled them up.  Grandma was there at the end to give us all hugs and warnings about how no one better have made Kiana do anything to hard :). Here's hoping she doesn't check out the pictures of Kiana flipping over a tire all by herself. Mom, you don't read this blog right? I think if you look at those pictures of me in media I've got the right posed smile for that but if you look at the one of me watching Kiana be super girl, well that's the best and most natural smile I've got. That's what I've been staying alive for in many ways. My parenting philosophy is first you gotta give them roots but then you gotta give them wings. Some parts of watching them take wings is harder. This wasn't one of those times.

I looked back at what we had done the night before and gone on a bat cruise with a place I volunteered at. We were the only one who danced to the music and even though many were, we danced like no one was watching. I reflected on a recent triathlon that I had signed up with way too little notice but had signed up with a friend who was there the night the cancer started and who would beat me in that triathlon by about 20 seconds but I'm not bitter. I looked back at the picture of the friends who had met because she was visiting me as the cancer stuff got started and now they're engaged. They asked me to conduct the ceremony almost exactly 6 years after they met. See, who says I'm rubbish at weddings?

I don't know how much time passed between the buzzer being handed to me and me looking at those pictures and then it suddenly going off. It went by a lot faster than that other time had when I was absorbing the room. But those were the images I re-played through my head as they were drawing the blood with my eyes closed. My own blood was draining out my arm and making me light headed and uncomfortable with what results would come. There are people who always say well this is just routine follow up. I never know what to do with that comment. When this is all started it was just hey "we'll just do a CAT scan but that may not tell us anything"... then it was an MRI... then a biopsy... then brain surgery... then blood word which suggested the seizures weren't under control... then neuropsychological... then EKG... then EEG... etc etc. They were all theoretically routine at some level but they all showed some things wrong and some things right that on certain days, I'd almost rather not know.

I had gone long enough without eating or perhaps they had taken enough out that I was really light headed. This is when I needed a sugar mama not to pay the bills but to provide some Mexican coke or wine or ice cream or something just to feel better. I sat for a while before getting back to driving and thinking wait, I'm still driving and it's been almost 2 years of doing so!

The results would take a day. I skipped the crossfit workout I was supposed to have at noon since the wait had gone so long and that seemed less than safe but later I would do hill repeats with a weight vest. This was also the first time that Kiana ran with a weight vest (mine was 25 lbs, hers was 2.5). When the blood work came in, they were intense on lots of levels but everything was within normal range. Having lived in England, I couldn't help but say it was bloody good.

I went and looked at the pictures one more time that I had visioned during the blood test. Somehow it struck me that perhaps by happenstance or sheer coincidence again, every race Kiana has done this year, the Rogue Distance Festival, the Paramount 5k, the Gusher 5k, the Cap 10k and now the Spartan Super were without exception ones in which I'd been interviewed and filmed for articles in too many place. In none of them were there now cameras focused on me and it was better this way. I was never in it for anything other than to share time with people I care about and somehow the privacy in a public place was welcome. All I had been trying to do then and now was give Kiana a place to write her own name. She had done it on the Spartan wall before we raced. I hope someday she realizes that the reason I have ran with some of those friends, family and with her through roads, mud is that the people who were there for the health crisis were all family forged in blood. I hope she keeps realizing these bonds is why blood is thicker than water.