Thursday, April 27, 2017

Hold On Hope

Well after a month of waiting for blood work and other results, they all came back as normal. Some of the things we measure like blood pressure actually came back as improved. One of the things that brought all these tests about is a piss poor development. The truth is that I have to pee more with the medication I'm on. I honestly don't notice it much during the day though I've had a few people make fun of me for the fact that almost without fail I usually pee between the warm up and the workouts of track and hill repeats. Its appeared to be getting worse in the last year mostly at night (this is where everyone is wondering what I usually do, why does anyone read this blog) so getting up at night 5 or 6 times.. well let's just say I've done far more fun things in the middle of the night. The question in the bloodwork was whether the brain was causing some hormones to be regulated unevenly; the answer was no. My grandfather everyone in a while asks about some of the things that have come from this brain surgery and these medications. In both regards to peeing too much at night and memory issues, he's said with a grin well I've got those problems too man. Who knew brain cancer with epilepsy and being in your 80's could cause similar problems... what if the kid born 8/8/80 who statistically is not supposed to make 40 gets to his 80's?!? What then?

It's a dance of believing in both hope and statistical probability. A few weeks ago I got to speak at an event where they opened up a new art exhibit in the Livestrong Headquarters of an installation of a big egg made out of wood from a project called Hero's Journey Art. It's a project designed for patients who go through clinical trials and their friends and family, people who are part of studies. I have never been part of a clinical trial but I am actually tracked in a  couple of studies. My brain will be donated to science whenever I die because they want to know what a brand new one looks like. One of the things I shared was what is the study signup, "what we learn here may never help you but we hope it will help others." The two closest friends I have made with this same type of tumor both had it grow unexpectedly, it's typical pattern ended up both being part of clinical trials. One did it as her and her husband were finally 6 or 7 years down the road talking about opening up to having kids and then found out the tumor grew. It went well for her but they decided it was probably most responsible/reasonable/I don't know what the right word is to not have kids. The other friend already had a wife and kids but the clinical trial didn't take with him. He died at home just a few months after the growth was discovered.

It's a tough journey being known for being a cancer survivor and choosing to be active in part of the community. I've done things with Livestrong, Imerman Angels, the Brain Power 5k, Head for the
Cure, First Descents, Voices Against Brain Cancer and the American Cancer Society. Most have been actually fairly minor though some have been sustained but because I know it can be a lonely journey, without exception I have kept friends and relationships from everyone. Without exception, I've seen people had resurgences. The bonding is at different levels, like all relationships but when you see people you love reach out in faith and hit walls, there's no way to not be angry. One of those people is someone who decided to reach out and go for the lottery for their first marathon, the New York Marathon, which this year lands on my 7th cancerversary. They got in but at their next appointment... there had been some regrowths and now they have been told to get their affairs in order because they have a few months left at best. That's just one of many examples I could tell you of people I've met personally and frankly some 4 letter words go through my mind every time. But as I said at that speech and well every speech almost I've ever given, I go with HOPE as my 4 letter word. The artist had a brick to give me and I thought great that's something Kiana can do as she was standing next to me and she's the artistic one. He would end up giving us both one and... well I knew it would take some more creativity than I used to.

I originally was going to simply get hope burned into it and then write along the sides some key phrases from my hope pile (hope is the thing with feathers, no such thing as false hope, and hope is my 4 letter word). Kiana was originally going to write a poem on it. But as we went and shopped for arts and crafts to use, we tweaked what we were going to do. Kiana made it a word Believe with her unique touches. I actually painted Hope with chalk paint in my favorite color, no one will write on it but I wanted to believe hope is where things and written and sometimes erased, but there's always capacity to write on more hope. I purposely didn't fill it solid but gave it imperfections and different textures in different parts. I gave it its own feather and somewhere in the middle literally put my fingerprint on it. Hope, rising above, rather than burned in is my thing with feathers.

Between the bloodwork and the final results (a full month), there were a few things that occurred. One was a simple thing, the AC on my car went out. In Texas... that's a problem you resolve quickly. For a couple of days I actually thought about getting another car rather than sinking money into this one being fixed. Some of that was just looking at how many adapters now come in cars so that I can play music with my iPhone or charge it etc etc... Some of it was practical that as Kiana gets older it seems when I'm taking her and her friends to an adventure putting things in my car has felt like a jigsaw puzzle and a bigger car might be useful. But some of it, as silly as it sounds, was just trying to commit to further down the future. Because for better or worse, in 6 and half years of brain cancer, I have yet to commit to anything past 1 MRI's. That's progress because for almost 5 years I honestly had no commitments ever past a single one of them. They were then and now scheduled around Kiana's semesters so if anything goes wrong the transition to a different school would be at a more organic time. But to take a car loan for a few years could be argued as a poor financial decision but it's also a simple belief that you're going to be around for those few years. In the end, oddly enough, it  may well have been medical issues that kept me from buying the car. I keep all of my paperwork from everything but I finished paying off the car while not allowed to drive 2 months into the brain cancer journey and I couldn't find the title. I ordered a new one but it takes 30 days to arrive so... I fixed the AC. But there was something that almost, almost felt right to believing a bit down the road.

But down the road the journey continues. There was an article written about me running the cap 10k shortly after I won the marathon. No media covered it this time or last time but both of those times were ones I cared about a whole lot more. Last year Kiana did it and it was the first time she broke an hour and my parents also joined us. This year Kiana did it and took almost 5 minutes of for a 51:29 speeding up for the last 3 miles with conviction. You can check out pictures of me here in a weight vest but there's a kid constantly in the way. But she wasn't the only one who got a PR that day, the other lady who is now part of the household, my girlfriend Elaine also ran her fastest 10k that day and was there waiting for us as we crossed the line. We have a little tradition in my house of always having the most recent bib up in the kitchen. It's always just been two but even as I write this it warms my heart for the first time ever to look up and see 3 which coincidentally have our names .

When your girlfriend moves in, everyone from old fashioned people like friends and say your mother, ask when the wedding is... none of that is planned but it sure makes me believe in Karma. In the modern age where we're a little more tolerant about these types of things, every time one of my friends got engaged, I'd ask if they were nervous about losing their virginity. So now my girlfriend lives with me and I get asked when I'm getting married. I caused awkwardness and now get some caused. Who says life isn't fair? But people keep asking how it's going and it's going very well. I feel like I'm sleeping better and some of my lumosity scores are better for the first time in too long.

Perhaps a key to that is it's been a little over 2 years since my heart rate reached what it has stayed at since, 42. My heart therefore has within it the answer to the ultimate question of life the universe and everything. Perhaps it's a coincidence, perhaps not that it wasn't till it got there that shortly afterwards when I would start dating Elaine. There are little things that have crossed my agenda since she moved in, the trees are about to get their first real work done since I moved in the house over 10 years ago. There are times when I say that my life has been on hold for so long but the truth is that when you're on hold, there should be a reason you're making the call. I've kept raising a kid but that's someone you hold as necessary but it's just because they are still growing their wings. Perhaps I've had too many areas of my life that when I'm honest weren't on hold but really on standstill. It's a tough balance to pretend like cancer is irrelevant or improbable to return when you've had to say goodbye to too many people. I think of a friend who moved into the college chaplaincy work said it was easier than his previous job because he got to do lots of weddings and not many funerals. I've been to too many hospices and funerals. I will never be grateful for cancer but I am absolutely grateful to have met those people no matter how painful it has been to say goodbye.

I'm never going to pretend like I'm immortal. I've got an MRI in only a few weeks but the truth is the George Clooney girls only ever made it between MRI's. Kiana's mother, my wife of 10 years, only made it through 3 and that was over only 6 months. It may be a strange thought but if Elaine is still here come June 8th, something I'd bet on, she will surpass anyone this hopeful romantic has ever allowed into that area of his life. Maybe that's why we still hold each other so well.

There is still in fact nothing and no one in my life that I have a substantial commitment more than two MRI's away. With heavy debts and heavy emotions, I don't think it's that unreasonable of a position to have put too much of life on hold. But with it, I am glad, thankful, relived that there have been people kind enough to hold me, and people who I've been fortunate enough to hold. I've even been listening to music like Buble's Hold on,

So hold on to me tight,
hold on to me tonight.
We are stronger here together,
than we could ever be alone.

It is these people and these relationships why even while some parts of life were on hold, I've held onto hope.

Monday, April 10, 2017

Hell In Every Religion

If anyone wonders where I developed some public speaking skills, it's because I was a preacher briefly in a previous life (that's a long story). But I do have a degree in religion and have read the texts of all the biggest world religions (The Torah, New Testament, Koran, the Bhagavad Gita, Dao de Jing, the Analects of Confucius, the Book of Mormon etc). I've also studied the various rituals at sacred services of each one. I've never done it locally but when traveling out and about I've actually participated in basically every one of the major religious rituals like Mass at Notre Dame and and the Vatican, Yoga as part of worship in India, Salah in India etc). I've done this somewhere between the life philosophy of don't knock it till you try it; you don't have to try it, just don't knock if if you don't (if you think a guy who picks up hitchhikers, where this blog derives the name doesn't also allow fervent people who want to share their faith into my home, well you've read me wrong). But mostly because in the ways in which humanity finds the sacred and the devout I want to try to understand what has left us looking to and beyond the stars and deep within ourselves, a dance no one I've ever met has fully mastered. Someone who has traveled with me a few times who would argue that it's more respectful to observe than to participate if you're not a full believer once gave me a tongue in cheek hard time and said what are you doing? With a nod and wink, I responded with 'I'm just covering my bases man.' They responded smiling and said, 'no you're going to hell in every religion.'

This is a week that is a big deal in the religion I'm most closely associated with, something I say neither too loud in here or anywhere in my life mostly because I don't want to embarrass any person whose faith rhymes with mine with my inadequate representation (I presume any Deity can handle it). But it's been an interesting couple of weeks and as I have shared them with some people, a few have handled it with the only ways we often handle that which we can't help. Some do it with a good hug, with a stiff drink, with a conversation with an offer of prayer. I've never prayed to 'beat cancer,' something that somehow usually refers to surviving it so I join people in all but the last one and tell them they're on their own if they want to do that since I assume if Someone is running the universe I hope They have some clue as to what they are doing. 

There have been some things going wrong with the system in the last few months. Nothing dramatic by my book but then again I've walked out of ambulances, put off brain surgery to run a marathon so maybe I don't do medical stuff with enough flair. Last year I only had 3 cancer appointments (or 6 depending on how you measure it, tests then results in my book is a single appointment). I was hoping 2017 would go as well. This year something is draining the system and so we did the typical bloodwork plus some extra tests (not all results are in yet). I had to do a urine test which led to an ultrasound (Kiana was not amused at my pregnancy jokes). I'm on a waiting list to see if organs are affected/swollen by the medication I'm on and we're trying some steroids which I'm not a fan of. I'm on a waiting list for a few more tests once the full results of these are in. It's not likely that cancer is growing just being on drugs for 6 years, pushing the system the way I do, aging or perhaps the combination of it all has been tough (the only possibility that it could be a direct brain cancer effect according to the doctor was if the tumor was growing on a certain section and pushing on some part of the brain that I can't remember and couldn't spell if I did).

The tests actually started before I went to the Final Four. It was actually a couple of days after I had spoken to the premed students for the 5th year in a row. This year two different professors had invited me to encourage students to do the Lonhorn Run 5k/10k. The speeches went well though I forgot one joke in the first one and the professor said that since they had a competition between them that if he lost he was blaming it on my missing joke. 

Bloodwork has varied with results always having been in the normal range even if some things had shown to be on the acceptable low or high end. The last MRI also shows some millimeters of growth on the brain tumor but the one thing that has been absolutely consistent for 3 years is that my resting heart has been 42, the answer to the question of life, the universe and everything. If nothing else, I dare dream this means my heart has arrived and stayed in the right place. 

The results actually came moments before the game started and if anyone wonders why I got more steals, finally made a shot, dove for the ball a few times, it's because the results required more tests and intense physical approach is how I deal with medical stress (I may also be a bit competitive). It's also why I hugged some of the people that had gotten there with a little more conviction. But a guy who still confesses those things more here than to anyone in person, I only told one person on the trip and even my girlfriend it took me a few days to say it aloud... but believe it or not both of those things are progress for me. We'll see where the tests go but there were some other events between the bloodwork and the final results and the impending tests.

Elaine's father came to visit on the 1st weekend we were both home since we started living together.
Call that a coincidence but I call that being a good dad no matter how much he may have objected to being called sir or Mr. Chung. He's also a long distance runner and while he's been running marathons since the year Elaine was born, he just ran his fastest one and qualified for Boston for the 1st time last month. We started the weekend with a good meal together where when the check came there was a contest as to who could grab it first. I'll leave that question not answered here but let's just also add that it was an even score by the time the weekend ended. Actually that was part of my favorite time in the weekend that we actually did this whole conversation thing the entire meal. It may say something about the age of our souls in there that while they are both engineers, I was the first of the 3 to get a smart phone a little over 5 years ago, Elaine only got it a couple of years ago and her dad still doesn't have one. We were just chatting and liking each other in person. 

It was fun to have 3 runners together on a University Campus all doing the 10k. I was definitely hurting right from the start and I'd forgotten my iPod so my usual music distraction/focus wasn't there. While I still beat most of the university students, I was not the first non student to finish and I knew that about half way. I kept trying to find a kick but it wasn't quite coming but with about a quarter mile to go, a student who was wrapping up the 5k (both had the same finish) said hey you came to class, finish strong. That made sure that I did. The finish line got even more meaningful when a college girl came up and said she had told her mom about me and about the races I had done together with my parents and my daughter. She had just finished the 5k and was going back to finish with her mom. While I've had some wins and some relatively close times, I haven't hit a single PR since I turned 36 and wondered a few times if it was time to call these races and speaking bits a good memory but a part of the past if that's where my credibility lied. Moments like that with those students make me think it's not quite time yet to hang up the shoes. Elaine would come in second female over all and 1st non student. The fact that she has PR'ed in the last couple of races she's done with me I had blown off since she's 25. But her dad is still doing it in his 60's, I mean at 29... so yeah its definitely not time to quit.

But none of the 3 of us were sit around type of people and we joined an urban scavenger hunt that afternoon that benefitted Wonders and Worries, an organization that helped me and Kiana be able to talk about cancer and it's side effects far better than I had done on my own even if it took me much too long to get around to doing it. It was a 4 hour scavenger hunt but before we got the clues I didn't know if it was one where it was who got it done first or one where it was impossible to get it all done and who did the most; it was the latter. This is why I sometimes struggle with the concept of eternal life and frankly prefer a more limited life; I'm a fan of choice and life certainly echoes that there are limits to that. If there weren't, would we value things as much? If death and time had no barriers, I think for many, most of us, perhaps I'm just speaking for myself would lose the urgency. I will never be grateful for cancer or it's lessons--I base my life philosophy on learn from other people's mistakes, you don't have enough time to make them all on your own--but I do think an awareness of the limits of time that come with being clued into our own mortality instead of in denial of it, I think that's good for us. 

So we set out to do strategy, 3 Boston Qualifiers figuring out clues all over town with history, with fun, with pop culture. I loved her dad's spirit not shy of eating an all condiments sandwich, or cleaning a strangers car window or learning to dap in front of the Texas Capitol. Elaine was ready to serenade a stranger; I hugged one. We ran all over town and 4 hours later we were nowhere dear done with the possibilities in there but we had a ridiculously good time. (If you're wondering how to see it just look up hashtag #wvush71 on instagram and twitter to see our adventures. If you want confirmation of just how competitive I am, we got rear ended in the middle of the contest and I said to Elaine okay you handle uploading while I deal with trading information). The combination of legs, brains, creativity and willingness stacked up well enough so that we took 1st place in the Inaugural Wonders and Worried Scavenger Hunt! 

I don't know what will happen with upcoming medical appointments or the MRI in less than 2 months. I hope her dad liked our adventures as much as I did. In one of my religious studies classes everyone had to write an essay that if given full choice which religion's heaven they would rather go to and which hell they would go to if they weren't going in the right direction. There were many answers, some incredibly creative. I certainly am not trying to convince anyone that my views on the universe are the only option which can save anyone. But I do believe what someone said before the civil war, what MLK quoted and what President Obama said as he headed out of office that the arc the universe bends toward justice. I do think the universe in the end is just but I hope and believe it gets there by Grace. For me, for most (all?) of us grace is harder but more necessary on the receiving end. My favorite portrait of someone who gets to see heaven and hell and what they see in hell is an abundance of delicious and nutritous food at a table but everyone is starving because the only way to reach it is with giant spoons and no one has elbows that bend and they all look miserable. When the same person sees heaven, the circumstances are exactly the same except that the people are happy and well fed because they're kind enough to feed each other. I'm not sure what the after life holds or like Queen says, I even dare of living forever. But tonight, after I get Kiana gets home from school, seems like a good night to cook and share a meal together. 

Wednesday, April 5, 2017


March Madness has a special place along my cancer journey. It was during selection Sunday in 2011 that I was recovering after brain surgery at Duke and if there's anywhere that college basketball has an impact it's with the Blue Devils. The excitement of hoping to repeat from the 2010 championship was there and for me it was a welcome distraction from the actual pain of cancer. There was a joy in watching people jump and shoot and dribble when I was struggling to walk for very long. Duke didn't repeat that year but without fail I have filled out at least one bracket with them every year since then, something that worked out well in 2015.

But last year Infiniti started a challenge where you could refill your brackets after every round and for every correct pick they would donate a dollar to the American Cancer Society. The games were in Houston and 14 of us got to be part of the two inaugural teams of Hardwood Heroes, designed for young adult cancer survivors. This year they moved to Phoenix and they chose 7 new local players and 7 of us were picked to return. For those of us returning, as one of the other survivors said we couldn't be more grateful to have this once in a lifetime opportunity--twice.

We arrived once again to work on drills, passing ones, shooting ones. There were short interviews and the photos to remember it all by. But all in all, it was what I see as the the meaning of life that kept coming out, the ability to connect not because of cancer but beyond it. It had disrupted our humanity but we were here to disrupt it back. There were stories of people who had gotten cancer as an infant with massive surgeries at a time they have no memory of because they were so young. Scars that had been huge as a child to where they were still visible but stretched. There were people who had lost the ability to have children of their own because cancer had come to them when they were children who weren't thinking far enough ahead of things like fertility preservation. There were 3 teammates who had lost a limb and it didn't stop them from going down the court, taking great shots, playing hard defense and in one of their cases Devon and I went diving to the floor for a ball... he beat me to it and won the possession.

There were teammates who had dealt with it more than once, reoccurrences, some too close each other and some years apart.. I've never been through that and as I listened to the stories it was tough to decide which one was easier to absorb. Some of us whose cancer was not fully removable who had to deal with it as a day to day aspect of life. The intensity that cancer had to deal with each of us showed on the court with no matter how far either team was ahead or behind, no one blinked on the intensity of their dribbling, passing, shooting, defense. We got to play two 12 minute halves and anyone watching saw the intensity that we had for life displayed up and down that court.

The theme for this year's fundraiser was Unbustable since you got to make new picks after every round. But like a March Madness bracket that doesn't mean you picked the wrong or right ones, it just means you got a round by round perspective. This seemed to echo many of the players life approach, cancer had made us rethink our picks. Sometimes that meant doubling down all the way to the end but often it made changing it due to unexpected upsets. There were people who had chosen to spend their careers in non profits for people with some of the issues that had come out of their cancer experiences, helping cancer organization and amputee organizations. There were others who were encouraged they had made the right choice and made it again.

What makes a bracket unbustable is not getting anything wrong... something that no one I know has ever completely mastered. What made my teammates unbustable is the ability to take the unexpected failure of something within our own systems, sometimes because of genetics or randomness and choose to reset, to take the unexpected and pick again with new options, with new information. It is perhaps fitting that we got to do it in Phoenix, a city with a name from a creature which rises it's own ashes. As people shared stories about what chemo, surgeries, radiation had left them without but the hope that got us through it, it was clear to me that we all rose up from those treatments and hospital beds with serious fortitude.

Infiniti got fans who were there for the games to take free throw shots and get money donated for
every one within 60 second. The highest person had made 16 and one of our own teammates, Lexi, made 13 within that time. Last year, Infiniti donated over $700k to the American Cancer Society through people's picks and they will do so again from the picks and these shots. There were of course formal thank you's from us to them and from the CBS broadcasters about this effort. But Infiniti makes cars that have safety features that save people's lives; undoubtedly they hear from many of those people but there are plenty who they never hear from. The good they do there will be echoed by what this donation will do. And there they have will hear from many people, myself included of how grateful we are for this chance of life. It's my sincere desire that the program can't go on forever because somewhere they were part of the road map that eliminated cancer altogether, that there will be somewhere in the future where cancer is so irrelevant because good donations led to proper research that helped cancer be part of all of humanity's collective memory, not just the Hardwood Heroes personal memories. Perhaps this game, that donation, those connections will extend to infinity and beyond.

We enjoyed watching the games each day but after both nights of spectatorship, some of us survivors also braved the desert heat to climb up mountains since none of us are built for sitting around. Out in Arizona, there is no way to completely escape the heat but we'd been through tougher or as June Cash might have put it, if you meet with darkness and strife, the sunny side we also may view. A local Livestrong leader was kind enough to join us and give us water for the way. There were places where each of us had to take it at different paces but we regularly waited for each other and certainly joined up at the peak. In a complete fortuitous coincide we had all worn our #unbustable shirts. As we took in the views from the top of camelback, it disproved the idea that it has to be lonely at the top.

Cancer messed with all of the Hardwood Heroes physical system individually. By extension it messed with our friends, families systems financially, mentally and emotionally. But we're still going; we're not anywhere near done. Those donations haven't even been formally given so the way we're busting cancer back nowhere near being finished. I dream when it's all said and done, somewhere it's actually cancer that's all said and done and that's for whom the road ends completely. But until that day, the spirit that Blue Ridge Sports, Infiniti and the American Cancer Society share, I hope that spirit continues. And if you watched the Hardwood Heroes on the court, cancer didn't end us. In fact when people thought we might have been busted, those shining moments on the court showed we were just getting started.