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.

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