Drink of Choice

Back when this brain cancer journey started, literally a day or two after the biopsy, I was getting checked out of the hospital when the medical assistant/nurse was giving me the laundry list of medical restrictions. There was this medication that I couldn't take because it wouldn't interact with the antiseizure one I'd be on for a while, this other one that I couldn't take till I got off the steroids in a few days. I could no longer play soccer or scuba dive because impact to the brain could cause more issues etc etc. Then there was the food and diet which for the most part was temporary as the digestive system might me more reactive from the anesthesia. As the list went on, me, a guy who had never called in sick in his life and defined himself as an athlete, who is a leader or a control freak depending on how you see it, felt more and more trapped by a tumor that he still didn't even know what it was. Then they said, you can't have caffeine, you can't have alcohol and in the frustration and the humor coping mechanism, "I said what about rum and coke, don't they cancel each other out?!" The poor nurse looked up and stunned, confused and not getting that I was joking said, no no they don't cancel each other out. I told her I was just joking.

When the biopsy results came in the doctor actually clarified that it was okay on occasion but that if I was like a bottle of wine or a couple of beers guy or a regular coffee drinker, I was going to have to give that up. Those weren't true but for the better part of a decade now, on special occasions I'd order a rum and coke just to give a, how do you say it politely, fuck you to the medical restriction to my brain cancer, to show that somehow I was still strong and independent and brain cancer wasn't going to tell this guy what to do!

It became such a running theme (no pun intended) that at a cancer event with First Descents when we all had to go by self given nicknames (the only self imposed moniker of my life) I went by Rum and coke, something a few people still call me, others R&C for short. It became such a part of my identity that it was my signature drink for my wedding less than two years ago.

It was not until less than a week ago that I realized I'd gotten it wrong. When I got my MRI results last Tuesday I went home and drank a Mexican coke with Kiana (everything is better with a little Mexican in it). I was intending to have another later in the night with rum mixed in but somewhere it hit me that I'd gotten it all wrong. While the story of me putting off brain surgery to run a marathon has been told a lot due to the marathon stroller win two years later, I was determined to not let cancer control me. I also finished my last soccer league then (we won it) and what I thought would be my last ultimate tournament (we won it). Cancer would wait for me and since then I have not stopped for death--though if Dickinson is write there will come a day where it will kindly stop for me.

But during this quarantine, the drinking at my house has been higher than usual. You're welcome to judge me but there's been plenty of times where I've thought that at my home, we could have called Covid-19 the wine flu, I mean that's the bare naked truth. There's also been liquor but it has all been whiskey, bourbon and tequila (sometimes with company, sometimes dancing alone). The bottle of rum has gone untouched, waiting till MRI results I suppose. It was while getting it done on MRI day that I realized this was a place where I'd let cancer control me. It was a small, insignificant thing but it had done it for almost a decade that my drink of choice had been one I'd never liked. I didn't dislike it but it was just a reaction, a joke that became life. So I put the rum back and grabbed some barefoot bubbly, realizing for a guy who hates his feet that there are times you pour some champagne and you take your socks off and celebrate that in your way, not a reactionary way. My cancer wasn't cured, my tumor was probably stable (see previous post) but my celebration was my own. There was almost nothing negative about that day and leaving a reactionary joking drink of choice was a highlight.

I'm not some wise owl; I'm a running lion. These are polarizing times about some gigantic things, some of which should be fairly obvious like hey let's not be racist. I've been pulled over 6 times in my life for running while Mexican (twice in high school, twice in college and twice in Austin-one of those while working for law enforcement and the other while President of the Austin Runners Club). Three of those times I was put in the back of a police car and got no explanation until I was there. I also spent 8.5 years working with 'juvenile delinquents' and being on the other side of law enforcement, most of them working with kids with mental health issues and know that both the breakers of the law and the enforcers of the law have complicated issues to deal with and the solution is not as simple as let's get rid of all the police. I've been asked recently to be part of two non profit boards to better represent minorities (a Mexican guy with Arabic name could tell you some stories) and I'm considering it, trying to figure out how to be part of the solution but again I'm not sure I'm smart enough for that.

With cancer, I made a decision that I didn't even realize was a small win for cancer changing me instead of me fighting back for almost a decade. I also have let it affect relationships from the many years of the George Clooney approach where I was protecting them, perhaps not entirely acknowledging my own scars from being left in the middle of brain cancer. I'll try to do my best to not let negative things in my path or in society carve out my reactions just to say fuck you to them. The rum and coke was relatively harmless other than reliving one small moment after a biopsy instead of living past it. The George Clooney thing harmed some emotional capacity for me and people who me and them could have been better for.

So to those who have read this thus far, remind me to choose life period each chance I get, to share it. To focus on the solution, yes, of course protest the problems in our lives, the harmers, keep track of it, hope to God that we do a whole lot better than just keeping them stable. And when we do and get to share life's goodness and not just the necessary evil of bemoaning and fighting it's problems, let's have a celebratory drink during the little victories. And just to be a good sport and enjoy the connections, let's say cheers while we make eye contact and  I'll likely have whatever you're having even if it's rum and coke.

No Record of Wrongs

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, love keeps no record of wrongs. 
     -1st Corinthians 13

I just got through the longest time ever between brain cancer appointments. It was one year to the day between the MRI results of last year (June 8th) to this year's MRI. And what a year it has been. Kiana had her own annual check up delayed by 1 month but had grown 4 inches in 13 months. Oddly enough that development apparently changed her eyes to where her vision prescription also had to change. And the hormones have changed her enough to where she's decided she needs an edgier haircut. My household has all but officially grown by one adult girl since quarantine started. Being surrounded by 3 females has gotten it to be where in card games I had to accept that when you have an undefeatable hand, it's no longer I've got the nuts but I've got the ov's...

It was over 2 years (OVER 2 YEARS!) when this all started 9.5 years ago that I got to go a whole month without an appointment and now I hadn't seen any doctor or technician in regards to brain cancer in 12 months. I couldn't/can't decide if it's been an odd dream the last 9.5 years or an odd fantasy the last one. 

But it isn't just my world that had changed. The world itself is an odd place right now. We are dealing with a global pandemic with some people saying that the danger is a disease and others that believe it's just a way the right groups have finally figured out how to control and track us all (that was a while back and required no coercion... see cell phones and social media for example this blog). There are horrible examples of the systemic racism that has prevailed in the world and in this country for far too long seen in slavery, civil rights and far less than civil behavior from personal and official entities for too long. There were people reacting on the other side that you have to shout your agreement with them or you yourself are part of the evil with catchy statements like 'silence is violence.' 

In that world is where I had to go get tested for an MRI. The nightmares I had over the last few dreams (some of dying, some of watching a murder) made it seem like my mind itself couldn't tell which one seemed to emphasize to itself as a focal point. 

But the medical world itself was different. The place where I have gone to get MRI's for that entire time is owned by a large imaging company and the one I go to is not one that they have reopened yet so I had to go a new place. I joked that I now had to get a new makeup artist with a new photographer and a new camera but I hoped they got my good side, the humor coping mechanism ever prevalent. But it was more jarring than I realized. For starters, it was perhaps kardma that the guy who had refused company to medical appointments for so long was no longer allowed to bring anyone to minimize exposure. 

I had to get properly screen before letting go in the machine but it was a new place where I didn't know anyone. I am a guy who pretends to be bulletproof (they went in with a knife!) but realized I missed the front desk person, the hallway, the technician, the nurse. I was nervous enough to where I locked the key in the locker that keeps my stuff. I forgot to put on those dorky socks and was trying to go into the MRI section with my sandals (they made me change). I had to re-explain that I was deathly afraid of needles despite having been stabbed with them so many times while they were doing bloodwork (that technician said I should keep coming back here cause he doesn't get enough people with veins as nice as mine; so many people just want me for my body). Why was this room not as cold as the one I usually go to, I guess I won't ask for a blanket. There's this new machine I have to step in front of now before I go into the MRI, why never before? The machine looks different or do I just not remember right? This sounds different, the dye feels colder, this seems shorter than usual no? I often fall asleep during MRI's but didn't during this one, maybe cause there was no blanket but I was genuinely nervous. It was more disconcerting than 'normal' whenever it was that I had accepted brain MRI's as normal. 

I was as cranky (crankier?) than usual perhaps worrying everyone in the family would be better off without me  between testing and results. Still, the morning of the test I ran, the evening of the test we all played volleyball in the summer heat. The morning of the results I got up and ran a miserably hot several miles with Kiana till we decided to walk the last bit in because it was just not reasonable to run in this. Then the results themselves were in a new place, my doctor had changed location going from Austin Cancer Center to Texas Oncology so it was a new location, new staff there, socially distant waiting room where I was quite literally waiting alone. 

The medical assistant was very friendly and seemed to really know who I was and I was impressed with how thoroughly she knew my chart. It was not until she let me know that she had come over with the doctor that I realized we'd met before. The doctor came in and said that the images looked stable. There was a little bit of concern around the edges but that may have to do with that it was a new machine and the calibration may have been different. It was a newer machine period which is why it was shorter and it was a different dye. Yes that piece of equipment was actually new to the world not just that place. He did some of the memory tests, ask about my symptoms, about my family, about my running, told me about how his family has handled quarantine, his running. He showed genuine sympathy that during these masked times, with my facial recognition, must be ever harder because he's struggling recognizing some people with the masks they're wearing and he doesn't have that part of his brain damage. It reminded me of a recent roasting I received on my way out as ARC president where people from different runs of life commented on positive memories of me. They all messed with me in different ways but the biggest compliment one was one about how I really do care more about collective wins as a unit than I do about personal one (referencing puzzle rooms where I don't solve puzzles but I get people to work together well, I am at 100% success rate when I put together the team and only 1 miss when I don't... perhaps I'll go back and try it again with a crew). Another was a reference to someone who enjoyed working with me despite them having to meet me 4 or 5 times before I remembered. They almost all took digs at my ego, the driver and disrupter of why I do good and bad things in my life. 

Still when it was all said and done, he made the next appointment for 6 months from now. Exactly once have I gotten to go a whole year without cancer appointments but due to the unclear edges or clearer edges on the MRI, he wants me to watch out for certain things and for us to talk in 6 months as I pay attention to certain details of my symptoms. I should notice and if I don't, we won't need to do an MRI, just a conversation but if I do notice we may need new imaging. So it will be at least 2 years from now before I get a full year without an appointment again which is disappointing. But in the scheme of things, I am 2 months minus a day from the birthday I statistically wasn't supposed to hit, my 40th. I have no plans for it, who knows what the world will look like then but I promise you I'll be glad to be alive. 

I came home to hugs, nap and woke up for lawn games and Mexican coke. It's usually my tradition to drink rum and coke after a good MRI since when this all started and they gave me a list of medical restrictions, alcohol and caffeine were among them and I joked that if I had those two they would cancel each other out. But perhaps, I'll have a good wine tonight since I already had the caffeine and change it up. 

This blog's post and the quote up top is Bible truth. Shy of the doctor, every part of this medical cycle for me was a place with no memories. No associations of that this is where I had to go after the seizure, that this is where they had to do this test because of the incident. It was a place where I had to give them permission to request my old medical records because no one there had any record of my wrongs. While it was somewhat disconcerting, I loved the aspect of that to them I was a new patient, a new man that they had to look up, not remember what was wrong with me. They were kind towards this patient.  They were calm, humble, kind, and came across as selfless while serving in both building both of which had active covid-19 testing (one in person, one drive in). 

I don't know what's next... this is the most open my life has been in quite a while. Tonight I'm having wine with the adult girls of my house to celebrate. But I think love has been there for quite a while and it will continue to and I hope it continues to keep no record of wrongs.