Monday, December 11, 2017

Everybody Knows

Everybody knows that the dice are loaded
Everybody rolls with their fingers crossed

When I step in to get MRI results from my doctor, I am nervous. There are people who ask why... both people who have experienced the cancer world and people who haven't so it's not a naive approach (or maybe it is though which one is more naive would be a fair question). And while I've been probably properly accused of being arrogant more than a few times in my life, the one thing I avoid is hubris, try to avoid challenging whatever God rules the universe and somehow, somehow walking into an MRI results appointment assuming it's all going to be okay, seems like hubris encapsulated.

There are a couple of reasons for this, when you're waiting in a cancer waiting room by definition everyone in the room is sick or at least is there for an illness. Sometimes the wait is short sometimes it's quite long but either way I guess that's what you're supposed to do... after all it's called the waiting room. In Austin where we don't experience much cold weather, we had snow between the MRI and the results. It led to school being cancelled and my medical appointment being delayed for a couple of hours, longer than a half marathon takes me so it's forever. The waiting room included snow and was outside for a bit and at least Kiana enjoyed being an angel in it. In the modern age where people are telling me they're praying for me I'm not sure what to this day I've refused to pray for anyone with me to beat cancer when they mean not die from it because to me beating it is dealing with it right. But when they ask me if I believe in angels, of course I do, one lives in my house.

But as you walk into the Austin Cancer Center with your daughter and your fiancee for the first time, you realize the wedding formalities and ceremonies may be about 8 months away but you're already family even if you haven't figured out all the details. Kiana sat in the waiting room and said the pictures are the same. I had no clue what she was talking about and my mind was trying to make sure she wasn't 'doing hubris.' How could she possibly know the pictures are the same? We hadn't even seen the MRI images yet! Plus unlike I did for a few years where I'd take a copy home, I haven't done that for a couple of years since it only took me half a decade to realize I couldn't read them and sitting there trying to figure out myself served literally no purpose than to feed anxiety. But she kept insisting and I finally listened and she pointed out that there were painting prints on opposite walls where on one wall they were just sideways of what they were from the other side. I took pictures and rotated them to confirm but she was right. I honestly couldn't remember if I'd ever noticed the pictures before much less that they were the same but she noticed it on her first visit at this office. Was this some rorsarch test or lazy decorating? She'd said it so loudly that a couple of the other people in the waiting room looked up, one smiled at us, the other looked annoyed at us.

I sat there and thought and worried and was nervous. I thought of some 'cancer' siblings. I have a friends all over the country that have brain cancer, some the same and some different but 7 of us always have our MRI's and results within a few days of each other. Five of the sevens of us have had their tumor regrow since I met them. At the one in June two of them ended up having their tumor grow after years of silence... coincidentally it was two of the other three who had ever ran a marathon both of which I met through running after cancer so there were two things to bond over. But it also shows that well... long distance running didn't make you immune from regrowth but even though they've been doing treatment they are both still standing and running. One of those cancer siblings who also knows a few people in the community where we have overlapping MRI's said that she almost feels like that if you think about the statistics that if she's honest when she thinks about us and the results that it feels like Russian roulette. Russia is just getting such a bad rap on so many levels this day. Everybody knows in that room and community that not everyone wins against cancer and since I've chosen to be part of this community I've been to too many hospices and funerals. Everybody knows that the dice are loaded and so we keep rolling with our fingers crossed because we know some good guys have lost.

Shortly after that we got called in and after weight and blood pressure, I got to see my doctor where said as he always does immediately the results (that everything was exactly the same!). Last two times there was a millimeter of difference but nothing I should worry about (and I worried so little about it that I wondered why he mentioned it and have blogged about it now 3 times...). We went over history, a form that he'd gotten from my insurance and some of the piss poor side effect things that I'd gone to see an internal medicine doctor and then a urologist for and I may still have to see an endocrinologist for. But I told him I'd recently pr'ed in a race for the first time in almost a year and a half and he said it gave old men like him hope that I still had something in the tank. He said it may be long enough to where I need to do another neuropsychological, that 8 hour test that is somehow fun, intriguing, scary and awkward all at the same time. He brought up some medical records that are shared for custodial purposes. Elaine and Kiana stepped out of the room for that part since I figured that's best without Kiana in the room. When that was covered he actually asked again about some of the medication we tried recently and he said he meant to ask but didn't want to do it in front of my daughter if I'd had erection problems which is a possible side effect. I answered in the negative but somehow missed the opportunity to make joke that maybe he should have asked my fiancee... He once again brought up the 10 year mark and that if we got there we'd go to one MRI a year and that I'm on my way to 8 years and that he honestly thinks if I make 10 years I'll make it. It's only the 2nd time he's ever said anything like that... It somehow made the wedding a happier occasion to look forward to.

For the first time in forever, he didn't show me the MRI pictures and compare them to the previous one. Not sure why but I honestly notice but the image I walked out of the appointment with was Kiana's idea of the picture being the same but a different angle. What's disturbing my brain hasn't changed... I'm just learning to view it from a perspective that's shared with people I love a little more, only a little but if nothing else is progress, as soon as I set the appointment for the next visit I invited Elaine and she put it on her calendar. She's the only one that gets that save the date.

The weekend went well after that. We put on the Decker Challenge half marathon that working on for ARC is what got us to date. It was my first half marathon, it was my first one after finding out I had cancer, one I reference in speeches for giving me bib 911, voiding the need to put the emergency number on the back. It is my fastest half marathon period and my fastest one ever with a stroller. For better or worse, it was the first place I said I love you  to Elaine about 15 months after our first date. It took me longer to say I love you from our first date than it took me to propose but if nothing else it shows that I say what I mean and I mean what I say. I snuck into the 5k and took home the win. It's a finish line I've crossed every time since my initial run of it. And it's still getting better each time.

There are things everybody knows but sometimes we live in denial of, refusing to accept our mortality or our 100% probability of death. I don't want to live that way or with hubris. But everybody who knows me also knows that from every angle even if its not inherently obvious,  I will always see the future with hope.

Thursday, December 7, 2017

Dream In The Dark For the Most Part

'We dream of a brand new start
But we dream in the dark for the most part
Dark as a tomb where it happens'

There are things that happen regularly in life and yet we never quite accept them as normal. Perhaps highest on the list for most people we know is death. In the circles that have come into my life that far too often comes prefaced with a cancer diagnosis. That of course comes with biopsies and blood works. Today was one of those normal abnormal mornings for me. I just left the MRI but I changed some of the chords on the way I usually sing the song. The most atypical bit is I had someone else there, good support back up if you will as I took Elaine with me. This wasn't someone having to give me a ride because I wasn't allowed to drive and waiting around, this wasn't someone filming for a media piece, this wasn't someone showing up thinking that my pushing them away wasn't sincere. This was my fiancee invited, awkwardly welcome at a theoretically minimally invasive procedure.

A few days before her, Kiana and I went to climb Enchanted Rock, a park that I'd never made it to. I had once attempted to go with two cancer survivors but it was closed. Now I was going with family and we discussed going on a guided tour but ended up climbing it ourselves in almost drizzly weather. We got to the top and then started to descend in a way that wasn't exactly on my agenda. We went down a cave which got smaller than opened, than another one which got even smaller and seemed to open up less. I'm claustrophobic and there were sections where my breathing was more disturbed than when I'm doing a track workout. I reminded myself, pretending that it was directed at Kiana that you don't let fears get in the way of adventure. There were moments of relief where there was a clear out somewhere in the way so at least I knew I could climb out far more efficiently than you got in and we kept going for over an hour, squeezing until we got to a place where Elaine and I literally no longer physically fit. Kiana was still able to go a little further but came back. Her fearlessness somehow deeply encourages and scares me so often. 

A hike down where Elaine would slip and almost go head first except for getting lodged by a rock and a climb where Kiana also had a bit of a panic getting down the side of the mountain made to where everyone had fair scares, scrapes and bruised or bloody body parts. How can you not love people like that who did all that and walked on smiling? 

Getting ready for the Decker Challenge that we put on and getting ready for an MRI on the same week makes for interesting head space so that was a good way to start the week. Self awareness is not a quality I lack so I know that somehow both of those stressors help me focus on my strengths and also make my bad habits a little worse. My track workout was one of the best I've had in a while with me singing some fun songs in the middle of 800's. My chocolate consumption, not my best habit but not one I'll give up, was higher than usual. And a questionable approach at best, engaging in online political debate on people who I have higher expectations of than cheap shots was also one I engaged disproportionately too much of the last few days. 

It's the coldest rainiest weather we've had here in a while but if there's one entirely healthy coping mechanisms is running so I went and did it in the rain. Kiana did it too and made a drawing of her run in the weather declaring that the smile on it was what we call artistic license. Appears she's picked up her dad's humor coping mechanism. But as I got ready to go to bed on a cold rainy wet night I thought of lyrics from the song the previous entry was plagiarized from and that are quoted about, we dream in the dark for the most part.

The dark hadn't stopped us from running or climbing or dreaming. So rather than entirely sit and think about the next morning, we sat and picked out some potential songs for the wedding. The truth is it's our hope that it won't be much like a wedding in many ways but just a party that happens to include one. But the wedding coordinator had sent a well timed email about be thinking about songs that you want to dance to or enter to etc so I started letting my mind go there instead of entirely about the dye that would go into it in the morning. (By the way, what songs are fun to dance to at a wedding in your book? I'm open to suggestions). Invariably some sad or worrisome songs got played to acknowledge all emotions but I think the hopeful ones won. 

Elaine came with me to this morning's MRI. She got to see the amazing medical clothes I get to wear which encouraged me ask the tech a wink-n-the-eye question about which one of us had the better outfit and can you believe the tech said her? I guess I gotta get used to that before the wedding. It was a new tech doing the bloodwork who asked me which arm; I hadn't thought about it in so long because the other one always did my right arm and I said I don't care. She did my left arm... which was a mistake because I look away but the stuff they're going to use is all next to my right arm so looking away still reminded me of those needles I dread. I closed my eyes and went to the dark. 

During the MRI itself Elaine was in the room. For a guy whose claustrophobic isn't it great being stuck in a tube where they tie you down but hey they put a little mirror so you can look out. I actually generally don't because it's just a window to the tech that also sort of reflects back to you. But this time, Elaine was in the line of vision and reflection and I couldn't help but think of that I was seeing her seeing me in a blanket in a machine. The tech had said that it was good that she could see something that was going to be part of my life. I thought of that as I sat in there. I thought of wedding dancing songs. I started working on my annual 8 year's resolutions (one of the 3 I'm already absolutely committed to is no longer engaging in any online political conversations). On those conversations people don't often make progress because they aren't really listening and therefore can't fully understand. I don't expect Elaine or Kiana or someone who hasn't gone through cancer to have all of the same association just as there are some things I won't fully understand parts of being female but we do I think fully listen and thus have a very meaningful connection.

The tests are done... now it's the long wait till the results tomorrow. Still going with the superstitious approach that 8 won't betray me and getting the results tomorrow are all but guaranteed by just having it on that day. But then again my biopsy started back on November 8, 2010. Still, for the first time ever, the techs who did know me were introduced to Elaine for the first time. I joked with them that as much as I like them, I don't miss them at all. But when it was done, they said something they've never said before. Usually they say good luck or good to see you or something innocuous but they said oh it'll be a good scan and we probably won't see you again for six months. I don't do hubris but I live by hope which they added a little more to in my soul even while the dye that they use to create contrast is still rolling around in my stomach. Still, I renewed my license this week and see how little people say I've changed in almost a dozen years between the pictures makes me wish that the tumor follows the example of my face, could use a lot of improvement, has some wrinkles but doesn't change very drastically for at least a couple of decades. 

It's still cold and it's still rainy and I'll repeat my oft said joke that I'd say the suspense is killing me but if something's killing me it's probably not the suspense. But no matter how it goes, I promise myself, her, and anyone whose listening that I'm absolutely committed to taking those dreams from the dark and putting them in the light for longer than tomorrow. At most MRI's if I was thinking that way I'd honestly be saying dream with me but at this one I'm saying dream with us. And if things get a little darker with tomorrow's results, we will take it like Van Gogh's starry night and add some dark dreamy chocolate.  




Friday, December 1, 2017

The Room Where STD's Happen

I'm a week out from results which means I'm six days out from the next MRI. Invariably I'm nervous... I like to live life as a hopeful romantic but often end up as a cynical optimism if any of that makes sense. How do you not step into the room that has the same type of machine that led to the awareness of cancer, the same type of machine that they used on you right before brain surgery, the same damned machine that they tested you after seizures and pretend it is no big deal? I am aware, I KNOW that I'm not on top of my game when those are nearby. My hoping and coping mechanisms are thrown off and while it's against my religion to have bad days, those are the days I come closest to sin.

A consistent thing I detest that happens on those days besides the machine is bloodwork. They always test for STD's because I always forget which ones, but apparently certain sexually transmitted diseases show up in the brain and if anything new shows up they want to know it's cancer not that. Is that supposed to be comforting? When the results come in they consistently say 'no new std's'  I joke if there are any old ones they aren't telling me about. It tells you something that I go to them alone, inviting almost no one in over 7 years of dealing with this brain cancer tumor. Reminded of my vulnerability and mortality, I try to protect other people from it (or is it myself I'm really trying to protect?). It tells you something that Elaine, the girl who is now my fiancee has never been allowed to come with me but the only people who have been properly invited since brain surgery are my brothers and daughter. I guess it was the people who were already stuck with me that I had to let in and this girl is now deciding to figure out the 'in sickness and health, for richer or poorer, for better or worse and till death do us part' should be let in. Those vows mean something rich in this situation. Our wedding won't be very traditional by any standard but I hope we figure out a way to work that in verbally but I have faith it will be true in at least life.

But Elaine's finally invited and coming to this MRI. We can call it the rehearsal dinner in its own way. I proposed before the hardest and messiest and coldest race I've done all year. And she said yes and we got it done. My gender often idealizes women to be guiding forces or damsels in distress. The reason I'm fortunate enough to be marrying her is because this will be a partnership of equals even if we are nowhere near exactly the same. The inspiration for the proposal came from a dream but it got reinforced when reading something CS Lewis said about women: “The romantic chivalric tradition takes...the young man's eye off women as they are, as companions in shipwreck not guiding stars.” I'm asking for her company at a time I know I'm a wreck while there is imaging being done on the damaged rudder to see if its anymore broken. But unlike I've done in over two years of dating I'm finally growing up to invite her to be in the room where it happens.

We've been there for messes before, some fun ones like Spartans or last week with her first attempt at the beer mile where she thought about quitting and I said we don't take quitting in this family. She had to take a penalty lap for not getting all her beer properly drank but I joined her for both parts of it (I took 2nd place in the beer mile... not sure what it says that the only two local events I've always placed in are the stroller division and the beer mile). With obstacles or bloated stomachs or IV's in the arms and metal in the brain, it's not all fun and games but maybe you find a way to smile at the beginning points in the middle and hopefully at least one good in the end. We managed that in the beer mile; but even sober I dream that smile won't ever fully fade. Apparently while drunk that weekend, I got teary eyed and voiced how this year's Turkey Trot with Kiana's PR meant to me more than any of the stroller wins. I wrote that a few days ago so it was true then and if my true persona is one that finally lets a few more sentiments be physically honest, that's not the worst way to handle alcohol in my book.

Those are the type of things that I hope to be thinking about while a machine is whirring around me. Kiana drew the engagement ring and added her own little element on to it, a dandy lion. I'm not sure how hope gets any better. It's because we'll finally have a very intimate date together  with me inside of a machine while Elaine's outside of the other room that lets me forward to a wedding date. The date has been set on 8/18/18. People think its because I was born 8/8/80 which is partly but Elaine picked it, literally one upping my birth. But 8 is also lucky in Chinese culture which is where her heritage is from. We're figuring out the details of the Save the Date Cards and I'll be thinking about that ceremony and it's details while my brain is being scanned. I've started calling them STD cards for shorts so on that side there will definitely be a way I get STD's into some people's mailboxes and homes relatively soon. We've been figuring out the invite list. It's not a huge venue but either way well... we won't be inviting anyone by obligation. But in a world where we have lots of friends the criterion we decided on was that we would invite people who we'd shared time at one or the other's home in. There are people who we're friends with because they're a similar speed or people we've worked with who are good to chat with but did we ever have a relationship in 'our own time'. If that's not true, those in my book are probably not the right people for our wedding invites.
I want to share the special occasions for those who share the ordinary times, the rest of my life with the person who handles me at my most primal fear or intensity. Turns out that those are just gradients on the scale of the wedding and the wedding invite list. So if you don't get an STD from us, don't be offended, I mean trust me having seen it after so many MRI's, the medical world thinks that new STD's would be bad.

However, it goes, who knows what it will interrupt but it is perhaps a sign that the universe has given me that I have till Monday, 3 days before the MRI and 4 days before the results that I have to land a deposit on the wedding venue we picked out. And it will, if all things are stable, have at least one more MRI before the wedding could occur. I proposed with a hope band, the medal one that also is 'hope'ful will arrive in a little while. I grew up in a country with napoleonic code and Napoleon said at least one thing I want to to echo in my marriage and my MRI: "Courage is like love; it must have hope for nourishment." Both are the best nourished they've ever been.