Hope as a muscle

'I am and will always be an optimist, a hoper of far flung hopes, and a dreamer of improbable dreams."

While I did not start this blog on November 4th of 2010, the day before my brain cancer journey began, that was the first day I blogged about. I called it the end of days because well it would be the last 'normal day' of my life. I've had some reprieved ones between now and then. While I usually make it a habit to blog on my cancerversary, this year I'm making it the day after.

I still 'remember, remember, the 5th of November.' I didn't think I was going to make it till yesterday. The 10 year survival rate is 12% and while there are other ways I like being a minority that wasn't one I expected but I dared to hope. I've often stated that hope is my four letter words (I'm no saint; I've let other ones out in the last decade in regards to cancer) someone once said to me was hope is a muscle. 

I loved that analogy. I've exercised it as best as possible; there have been times its been exhausted like any muscle, sometimes it's been sore. But like a whole lot of other muscles, I keep exercising it in a way most people find unreasonable. Yesterday, November 5th, was my 900th consecutive day of exercise of 880 calories a day (that obsession with 8 since I was born 8/8/80). I didn't do anything particularly special, or have anything planned anyway. I started the day with a run with a post cancer friend, on a route we often do on Thursdays which right in the middle has a very steep technical hill called "The Hill of Life." Realizing I was still alive on a day maybe I shouldn't have been I gave it one of my best efforts up, probably top 3 in my life and certainly my hardest one by myself (my friend was smarter than that). I was breathing hard at the top but a lot of life's best activities leave you breathing hard and on top. 

I had a board meeting for a non profit I'm helping with where it was stated that this was me celebrating my 10th anniversary of being cancer free. I didn't feel the need to correct the detail because it seemed like a downer to tell them I still had cancer and it was 10 since I'd gotten diagnosed so I focused on the meeting. We're going to do some cool stuff. 

I had a phone call with two friends that I usually have lunch with on November 5th and we talked about the life transitions that start today where a month ago I had two women and a teenager and now I'm headed to California and coming back to just a teenager and single fatherhood.

I had an afternoon run planned with an old lover and partner in crime, now an ex, who wanted to kidnap me to celebrate sunset and drinks and past time. We were connected from pre cancer days and it's interesting to see myself in her eyes wondering if she underestimates my damage or I overestimate but a few laughs and moments made me realize that today and tomorrow are a bigger deal than a decade sometimes.

But what I had each of those moments was far flung hope. I've had far flung hopes before about love and faith that haven't worked out. I've had them about other people's lives and cancers which have not worked out with them now gone. I've had smaller ones about races or finances, some which have crashed and some which have landed and it turned out to be smaller than I realized to win a race or settle some bills than it was to love and be loved. 

Some of these blogs have gotten quoted, some of them have been printed after being cleaned up, some of them have been deemed less than appropriate, some inspirational but all that they have been was a journal of a man who is wondering why the universe keeps suspending what felt like a death sentence. I've tried to justify it because I exercise so much and studies have shown that long distance runners have a higher survival rate for brain cancer but I also know some who have died. I've tried to dismiss it as blind luck but anytime I see sunflowers turning in nature, I think there has to be something to the beauty of chasing life and nourishment. 

My brain is damaged and cancerous. My heart is healthy though not at it's strongest. My soul isn't sure it's singing that things are well with it as well as it should be. My life is changing (see previous entry). But I have life and I have hope as my muscle and I'm going to keep exercising it. Thank you to those of you who have done some of that workout with me. 

The Afterlife

 “Living like you’re dying isn’t living at all

give me your cold hands; put them on my heart

Raise a glass to everyone who thinks they’ll never make it through this life

To live a brand new start”

I’m a little under a month away from my actual 10 year cancerversary. I usually and imagine I will this year write something on it but I’ve spent the last week working for the census in Montana which has given me tons of great views and perspectives during runs and lots and lots of time to think on the road. 

I’ve been reflecting on a lot of life but someone asked about the scar and I realize that while 40 was the magical age i wasn’t supposed to reach the actual 12% survival rate is 10 years from diagnosis and I still remember, remember the 5th of November. I’m starting to think I’m going to make it ;). 

Oddly enough, some parts that are different and some parts that are the same are eery. Back then I was working for the government and they were about to let me go for brain cancer reasons after a few years. this time it’s only a few weeks since it was a temporary job but now it’s the federal government so is that an upgrade? Either way I haven’t given a speech since February and events were the other way so unemployment starts again.

I’ve been sharing parental responsibilities but I am about to be the only adult in my household again. Elaine was laid off a few months ago and despite many job hunts here, the one she landed is in California and presuming all background checks get passed, she will be moving out there shortly. I cannot go with her due to custody things so a long distance relationship begins soon. The beard earlier in the year she said helped her with social distancing... Maybe I should have shaved earlier? It’s a tough economy but a promising career move; I guess wine and time will tell if this is for her better or worse. I’m genuinely happy for her but at some level obviously disappointed.  

My partner in crime girlfriend whose been sharing me and the house for most of this year, Jackie, is also off to a new job and a new place and a start and so it looks like we are breaking up the band and going back to being a father daughter duet, at least at the house. Still, that’s a story that I will always remember till the end. It’s wrapping up well. The last races I did were a trifecta, a marathon in the morning, a 10k in the afternoon, and a 5k in the evening. We both won the trifecta with her also winning the marathon and me winning the 5k. It’s tempting to retire there on a virtual race, my first one at 40 and a couple of wins with a partner. It makes you shout I love you to them. 

I am now allowed to drive as opposed to how I was a decade ago but really when the world is shut down due to a pandemic I’d rather have a seizure if it opened up more of the world rather than it be shut down to another disease. Back then, primarily for financial reasons, lots of trips were cancelled for years but they came back. I put up a map on the guest wall to remember to hope because there is no such thing as false hope. 

I read the Reynold Pamplet that the musical Hamilton references (the actual pamphlet not the song). It talks about the ay the press lines up with a candidate and they say certain truths etc. It honestly sounded like it was describing a lot of the modern day. I often say that change is life’s constant and it is but sometimes it’s just the details. Human nature progresses too slowly if at all. 

And I’m really going to be a sort of single father again because it’s just me and Kiana. At some level, it will be simpler. She’s 13 now, almost 14, and the girl who I can count on one hand the number of babysittters she had recently had her first babysitting stint of babysitting 3 children. She made $15 an hour and I realized that my baby no longer is one anymore. We’re getting ready to get her ears pierced, something she’s asked for since she was 9 and I finally cracked. She’s doing her 8th grade year virtually and while she concedes that she misses her friends but not the high school drama, I wonder how this will affect her. If there’s anything about the Leons, it’s that we stay in the hunt as long as possible and we are fierce. 

I’m scared. I need help. But unlike 10 years ago, perhaps because I’m 40 perhaps because I realize the pride got in the way of so many good things and relationships, I acknowledge it more, not much more but acknowledging it at all is progress. 

My head always, and sometimes my heart, and on occasion my soul still have confusion and gratefulness. Confusion from the ways they are damaged and gratefulness that even damaged they still have function enough for most moments. Some they never will remember or experience before and others like Van Gogh’s ear,  you damage yourself in declarations of love and sometimes it feels like you’re throwing away something of yourself but know that in risking, you have a shot and well, I’ve been playing pig and horse with a friend who has a rim and I’ve never come close to winning but you don’t win if you don’t play.

I’ve long called the diagnosis after cancer Life Part II. I am almost tempted after the 10 year anniversary to call it the afterlife and to live it according to the lyrics. Living like you’re dying isn’t living at all? A lady from church offered me that song a while back and I thought it was at best silly since we’re all dying. I may have been missing the point. I’ve lived life from MRI to MRI and it’s ironic that just as I started dreaming further ahead to a race over a year away or a trip further away they got cancelled. So I’ll try to rebalance that with one day at a time I get tired when I do two. 

The afterlife, will it be heaven or hell? I’ve given up on predicting the future from MRI to MRI much less for a decade from now. I know I’m lucky. I’ve been to too many funerals over the last decade. But know that I’m thankful for hope and love and that I will keep going after them my entire life. 

Eulogy

 "So often in life, things that you regard as an impediment turn out to be great, good fortune."" -RBG

2020 has been a strange year... by any measurement that I can imagine. There have been times where you feel no choice but to turn even things like my 4 letter word hope and declare it a delusion. While the thoughts running through my head right now have been ringing for a while, there were prompted by Supreme Court Justice Ruth Bader Ginsburg death Friday night. I received a text telling me about it and it is the only time in my life I've had an audible reaction to news. I have no shame in admitting that I literally cried. 

I'm not a liberal, heck not even a democrat (not a republican either just for the record, an actual independent that is proud of the votes he has cast for most people of both parties and ashamed of a few for both with how they panned out). But RBG was one of those people that is too good for our times and therefore made our times better. 

Two of the strange times this year have been when I left the ARC presidency. They were kind enough to compile some paragraphs about what I had done for the running community over 5 years there. They presented them at my last board meeting as I was transitioning out. There were clever ones and funny ones but my two favorites, if I must admit, were ones acknowledging my connection with Kiana and running and another one that seemed to suggest that I may have done nothing individually other than getting the right group of people to gel to get collective wins. For my 40th anniversary, Jackie was kind enough to put together videos of people wishing me well for the birthday I thought I wouldn't arrive at. All 3 of the women in my house whom I love dearly and emphatically also made a skit video making fun of my mannerisms. They were the ones I spent the day with and if that kind of love isn't worth staying alive for... I don't know what is.

But as I watched the videos with them at the end of the day where people said different things, again some comical, some more serious, it felt as awkward as I did pleasant because since this was celebrating my 40th birthday, the one I thought I'd be dead for I wondered how different the speeches would have been if they were at my funeral. I hope they skip me having a funeral but if they don't, I hope they would say something similar. But it has inspired me to continue a path I began long ago which is to say things to people for no reason at all. I don't always have the courage to say it to them in person when prompted so something it's the cop out (for me) of a text or an email or a social media but I have a 97% batting average of saying it to them. 

I've watched the statements people have said about RGB from people who opposed her views etc but realized that we are more than the sum of our views (I wish that was a little more prevalent). I wonder if they ever said them to her; I hope so. 

But just a few days before, at an age similar to RBG's, I was at my grandparents 70th wedding anniversary (an event of a very few people in person and a lot of people on social media and zoom and facetime). They were 86 and 89, so respectively 16 and 19 back when they got married. There were speeches and toast. I gave mine quoting my grandfather to take it one day at a time, you'll get tired if you do two. That's how I've gotten here. When it was time for him to leave, he's not able to walk or drive anymore but he rode his scooter out to his van and with stubbornness and strength and pride, he refused out help and got himself into the passenger vehicle and as he struggled but succeed to get there, I realized that's how he got to 89 and likely how I got to 40. 

The quote above from hers is to recognize your good fortune. In her case, she shared it with literally the nation and time and history. Most of us won't be that fortunate. But I've never met anyone who didn't have great things in their life it they just took a second to let them sink in. They make fun of me at the house because I misquote a song (which inspired Kiana's art in the garage);

Don't it always seem to go
That you don't know what you've got til its gone
They paved paradise
And put up a parking lot

Eulogy is what people usually associate with funerals but it actually comes from the greek meaning good word, no more no less. So may I remind you some and above all me that if there's something good you have don't wait till it's gone to know what you've got. Send them an email, sing them a song, write them an emoji, call them but give them a good word long before they're gone to them not about them and maybe even if they're in a parking lot they'll be reminded that the connection the two of you have is part of paradise. 

Only Time Will Tell

"I keep hanging on while this old world keeps spinning and it's good to know it's out of my control

If there is one thing I've learned in all this living is that it wouldn't mean a thing if I let go 

Just one more candle and a trip around the sun;

They say you never see it coming; you wind up wondering just where it went

Only time will tell if it was time to spent"

 Trip around the sun

There is nothing I could say, write or feel today that would be adequate. I feel inadequate about many things in life but this will be high in the pecking order because I genuinely believe I should not be here. There are people who want me to believe that it was the running, the fathering, the loving, the being loved, the hope, finding home, the right doctors, the prayers. It would be easier to absorb that except I've been in the circles where people who were doing all those things those as well if not better than me are now, falling below the median, exactly at it or after it. This thing has a 12% 10 year survival rate. To misquote a few lines from Hamilton that we had a sing along too a few days ago, "Love, life, death doesn't discriminate between the sinner and the saints and we love, live and die anyway." 

How do you measure a day you thought you wouldn't arrive at? I've met many cancer survivors and patients who genuinely for reasons of hope, or fear of death that they will be in the small percentage of statistics when the odds are stacked against them. But I'm a poker player and I bet on the odds. That's not what I hope for of course but what you bet on and what you hope for don't always match. Trust me, I'm a Dallas Cowboys fan. In poker though the kid born on 8/8/80 always bet on pocket 8's. In almost 15 years of playing I'd never once lost with the. They actually failed me for the first and only time ever in online poker during corona virus zoom poker with friends... it's silly but the loss of the poker game wasn't the upsetting thing, it made me nervous about getting to this 8/8. 

How do you celebrate it? I had hoped to have a birthday party and invite the contacts both old and new but of course the world is shut down right now and you don't celebrate by risking other people's health and possible death. Oddly enough the guy who hasn't had a real job since being fired due to brain cancer  is spending it working. A friend had reached out about applying for a job for the census and it will be my first day counting people. I was working for the county government full time at age 30 and working by contract part time at age 40. Is that a promotion? I appreciated one of the executors of my will joking that was not right since I had reached retirement age. 

I was essentially home bound due to seizures shortly after the cancer diagnosis. Statistically speaking I wasn't supposed to make 40. I had just turned 30; life goes down hill fast after you turn 30. Or does it? I've hit my fastest time in each distance during then including matching my high school mile at 35, my fastest 5k at 37, my fastest marathon at 38 and in the age of things being shut down 4 sub 18 5k's virtually. 

How do you measure relationships? Almost everyone who visited the hospital when this all started is still someone I'd reach out to. But that almost is key. I imagine Kiana's mother is not sending her well wishes but I do still have plenty of love all around me. I am now living with 3 people who are family, two adult women and Kiana. In home boundness, how they get along with each other and with me varies on any given day (I grew up with 2 brothers and too much testosterone and my dad and now I have 3 women in my house with a lot of estrogen, the universe balances itself in the end doesn't it). Still, there isn't any day where I don't feel genuine love and affection and appreciation for the balance they bring to life. 

I was putting off brain surgery to run a marathon at age 30, now I'm wondering if and when I'll get to do a race again. But I'm running and running hard sometimes and running easy more and rarely running alone, something I did a fair share of the time then because it was unusual to drive somewhere to run and also I couldn't drive anywhere. But between 30 and 40 I've ran next to my family for their first 5k, spartan, 10k, half and marathon. Heck, between 39 and 40, I've ran with the women I love from my own household for their first 100k, for their first half marathon, for a Boston Qualifying Marathon. I didn't care about their time or place; okay that's not quite true but it wasn't the primary purpose for running with them. I cared about my time and place with them. I've ran with male friends too helping them do their fastest 2 miler and trail marathon, keeping pace. Is running next to someone, walking next to them perhaps one of my love languages? 

There is an awareness of the privilege, the obligation, the responsibility of still being alive. It is perhaps entirely appropriate that the first gift I got was one from someone who was widowed due to brain cancer, a clear reminder of how fortunate I am. The most recent one was someone giving me a crappy beer but also making a donation to a cancer organization that I've recently joined the board. I always say hope is my 4 letter words but how much did luck play out because I've been to enough hospices and funerals to where I have no doubt better people than me have been taken by this. And there are days where 'the obligation of the cured' makes me wonder if it wouldn't be better if we were in opposite spots of the ground of which one is above and which one is below. I've been criticized for expressing that 'dark thought' but I imagine it's darker underground so I have no apologies for it. 

I've gotten to be somehow both more passionate and more calm over the better part of a decade. I focus or at lest try to more and more on picking the hills I'm willing to die on and letting everything else be flexible. And I make less and less hills the ones I'm willing to die on. But I live on climbing mountains and running through forests and fixing things around the house and making home. Turns out some of the things I believed at 30 before cancer were big things are pretty small, and some of the small things I believed at 30 before cancer were pretty small are infinite and important. 

But boy has time flown. I spent 5 years as the volunteer president of a non profit and just stepped down and have now been asked to be part of 3 non profit boards in a smaller role. I had a 3 year old when this started who was wide eyed and wonderful and wondering, now she's 13 and wears glasses she wants to constantly take off and knows everything but is still wonderful. I had amazing connections and they're still getting better. I loved good food and good wine and despite spending a few years broke and having to live cheaper, the taste buds never lost their flavor. Even the smell of things has gotten richer even if I'm not. 

Some things besides being alive were just so doggone fortunate I almost can't believe it. Everyone of my seizures were 'convenient.' The first one was at a restaurant with friends. The most 'dangerous' one was on a run where friends found me not long after. The rest were at home or with someone I cared about who handled it well. Not once did one happen on a night where Kiana was staying at her home (she was with her mom). I got to see the best brain surgeon in the world at Duke, a neuro oncologist has moved to town. I've gotten to share my story with cancer survivors, doctors, a dean of a medical school, cancer navigators, runners, students, corporate people. More importantly, I've gotten to share it with people I love. 

The smartest thing I ever said was that you have to work on the relationships you want to keep. I keep navigating those relationships. In the last year, I've connected better with my brothers. I didn't meet my father until I was 15 and somehow despite his efforts I never really connected but here we are 25 years later working on it. Who knows when international travel starts again but I already have a plane ticket to the town I was born in where he already lives for March 2021. I've made little drawings on my board, something that despite that board being there for years I'd never once done, that was the girls territory. I'd never noticed that 40 is in two very important words to me, hope and home, home is where the story begins isn't it. But I'm still thankful it's not over. 

I'm heading out for a run because I've long said that statistics are like bikinis, what they reveal is interesting but what they conceal is vital. And I keep running to defy statistics and to look good in a bikini. This blog starts comes from lyrics from a band I went to hear months ago, when that was more common. They call themselves the renegades cause they were all secondary singers in other bands and they get together to sing together and take turns being the lead. I even took my favorite one's info to see if could have hired him after hearing the song above to play it at my 'birthday party' if one had come together. It's a great song but the concept that no matter how hard we try to create legacy and do things right, the truth is that only time will tell if it was time well spent. I may never know but today I am grateful for the time I've gotten and I genuinely hope and believe that it was time well spent. 

To Have Loved And Lost

I hold it true, whate’er befall; I feel it when I sorrow most;
‘Tis better to have loved and lost Than never to have loved at all.
-Tennyson

The above quoted poem is often misattributed to Shakespeare about a romantic loss. It was actually Tennyson writing about a friend who has passed away who he wrote poetry together. Still, the association of loving and losing is one that many of us have struggled with. 

Recently I went through an exercise I had planned for years. Back in the days of the divorce, about 9 years ago as I was going through cancer, when I was repainting walls and getting rid of many things to make the house feel new, it was tempting to get rid of many many things and Eliza Hamilton style perhaps burn them. But I did not instead painfully and slowly I put years of notes and pictures and memories into a big plastic bin. I have no memories of my father in childhood since I didn't meet him and he didn't know I existed until I was 15. I've heard many times since then and in adulthood variations in their stories about each other, memory getting painted by the present, viewed through shifting lens of theirs and my life. So I decided then to leave it all to Kiana to look through some day, I didn't know when. 

We'd talked about it for a few months but finally last weekend, I took down a box that hadn't been touched in almost a decade. I am not the type that holds onto things if they 'bring you joy.' I am the kind of guy that if things don't have regular functional use then well it's time to discard them. That box, or at least the thought of it, did neither. I opened it and started the enterprise with her, introducing to her what I had always called the dream book. It was a list of 'identities to be, things to do, and places to go' that had been the back of our wedding program, an ambitious list. I'd actually gone through just that the night before with the women I love in the modern age prepping for it with the young lady. Perhaps that had helped thaw the ice but going through it with her was just sweet, not bitter sweet (what I had expected) as I recollected a 10 year marriage and a 14 year relationship with trips around the world and home memories. Each accomplishment was captured in a page or two. The last two pages I had actually made on my own, somewhat uncompleted with no captions like the rest and made them post break up, things we'd done along the brain cancer path but never scrapped book. 

After that exercise I let Kiana have free rein. She asked about this and that and there were dozens (hundreds?) of notes in there since we had dated back in high school in the age before text messaging and had sustained a long distance relationship where we wrote actual mail not just email. She had questions about this content and that content but eventually said okay that's just way too much to read. She looked through some of the pictures. I told her she was free to keep everything and that almost certainly I would be throwing the rest away. She kept some pictures, interestingly enough some glamour shots and a very unflattering picture of her mother and something similar for me (I never did glamour shots). She's been painting and drawing those since. Unless I missed it, she didn't keep any pictures of us two together, something that I suppose makes sense since her memories of us are as individuals not as a unit. 

She spent a few hours on it over a couple of days and when she declared she was done, I thought it was too fast too soon! I gave it a few moments worth of thought that maybe I should hold onto it longer, let her do this again in a few years when she was more mature and could appreciate the love she was born out of. I did not. I started slowly emptying out the bin and the things she had spread out into a garbage bag. I did not read a single thing; I'd been there already. There were things that I knew what the content was; there were others that it was tempting to remember the details but I passed. I looked through a fair share of the pictures, without exception each of them brought a smile. I don't know whether or not absence makes the heart grow fonder but time had done some healing because, for me at least, all I remembered were happy moments, moments of connections, dreams coming true. The one thing I had decided I was keeping irregardless was the dream book. I was not committed to but not closed to the possibility of keeping anything else. Still as I went through the pile it was happy memories and moments but time to discard them, a pile at a time, sometimes one at a time. There was exactly one thing that I was hesitant about. Kiana's mother is from Hawaii and loved the beach so I had proposed on a beach, with a two sided shell that I had lined with blue velvet and pretended to find. Appropriately enough, on the way to the shell, she found a two sided shell for the first time in her life. Only minutes later I would pretend to do the same and would kneel to pick it up and then ask the question of a lifetime. Somehow I'd kept that shell, just remembering the container of the promise, and for several solid moments I almost kept it but ultimately remembered that the ring itself I didn't know nor wish to know what had happened to it so holding onto its container was silly even if appropriately sentimental. 

I did then and I do now, love Kiana's mother and will do so till the day of my death. I promised that and the container of that promise, my heart, is still intact. I've told Kiana that in the middle of some of the silly fights with her mother. I've told her that in my post divorce navigation as she had her first significant other, on the day of my second wedding, on the day she went through those. There isn't a day where her mother would need actually help at two PM or AM for anything and I wouldn't do my best to show up. Shy of it being in the early days when she was leaving with me a few weeks post brain surgery while I actually had staples still in my head and divorced me before even all the follow up at Duke was done or even less than a year after my first seizure, I didn't refer to her as my exwife. I still do not; her label in my phone and in conversation references is Kiana's mother. I suppose I hold the marriage vows, whether traditional or self written or some modern variation to be a lifetime one with our inability to make it last as intended till death as the biggest failure of my life. It is one of the biggest reasons for the George Clooney years. 

I agree with Tennyson that it is better to have loved and lost than to have never loved at all. Still despite what was a heart breaking event, despite years of court drama and life silliness, I choose to look back and forward at it as that love, if it truly is loved is always a win. People have different definitions of love. I've never liked at weddings or birthdays or when people describe someone they love and talk about how they love that person and then only describe what that person does for them or helps them with. That, perhaps is love, but isn't it the shallowest version where you love someone only for what they did for you, doesn't it make love merely transactional? I am far more inspired when someone talks about someone they love and the purity of obligation that comes to be with them and for them, to where it is a cycle that needs to feed each other but also serve outside there. Anyway, that's enough diatribe.

I hope to never lose anyone I love again to choice. Being part of the cancer world and life itself, well I lost people I love to death itself too often. But I hope everyone I say I love you to, something I rarely say, is someone we maintain and grow what got us to say it to each other forever. But even if I love and lose, I choose to maintain that love when you actually have it, no matter what occurs, is always, always a win. 

When Funerals Get Sadder

Always go to other people's funerals; otherwise they won't go to yours.
-Yogi Berra

I think I've made this confession before on here but I don't remember since I don't go back and read these entries but I generally skip funerals. The cancer world has way too many people pass in general and the brain cancer one in specific has plenty of its own. It is an odd thing, in my personal experience of the last few months that while there is a pandemic going on, the cancer world has shifted. Many friends are having to delay treatment, others are far more homebound than typical (a common thing in the cancer world during treatment or always because of damaged immune systems). However, in my own take on it, I haven't been going to visit anyone at hospices because I've stayed away from high risks individual in the event that I am a symptomatic carrier (I've stayed fairly shut in overall but while I'm not afraid of getting it, I do not want to share it period but certainly not with high risks individuals). 

But now has come the age of zoom everything. Zoom dates, zoom meetings, zoom poker games, zoom happy hours but the latest one for my universe was a zoom funeral. Well, not the funeral exactly, that was still held properly though with just very immediate family. It was the memorial service but because they recognized that zoom calls can be overcrowded while anyone could be there for any part of it, they split them up into sections of life, work, high school, college, and my group, the brain cancer crowd. I caught a bit of some of the one before me but surely mine had to be the toughest one for the family to watch or to be part of because it's a reminder for them of those of us who are alive longer that odds are weird. He got exactly to the median age of the disease. It's also a reminder to those of us who met him that way of our own disease and luck and well, survivor's guilt. That can't have been the best hour of this call, how could it not be the worst?

The truth is like most funerals I would have skipped this one but it would have been fairly obvious and 'ruder' than usual. I am the guy who wants to be cremated and flushed down the toilet. I'm the guy who went on a good bye tour before brain surgery telling people that the guy coming out may not be the same one going in but this one loved them. The guy who came out, me, still does. 

I don't know what to say. I get paid, or used to anyway, to give public speeches but everything I'd want to say, I'd want to say to the deceased before not after death. Which is why I go to hospices and appointments with people but not funerals. The thoughts and prayers we send are good parts of the human spirit but I try to be consoling with presence or perhaps just presence. There was a preacher in the old days that when someone goes through your head you should pray for them, that was God prompting you they needed help. I have no criticism for that then nor now (I did it then) but now when someone goes through my mind, I reach out to them. Perhaps as I saw narrations of life in my friends page was the prompt but I've called friends from Nebraska, California and childhood recently. I've worked harder on staying in contact with my family lately too, including relationships I'd never worked on and working harder on others and still on others making some decisions that are overdue since well tomorrow is not promised. I've not attended anywhere near the percentage of funerals I've been invited to and out of all the ones I've ever been to, despite multiple offers to do so, I've spoken at exactly one friend's funeral. It was the first time I was asked and I've never done it again since then. I've just made it a happy to let the people who I love know that I have and I will long before then and other jokes and stories. 

I've gotten almost zero races of my own this year that were real anyway. But phone calls and zoom calls are real ways to connect and so that's where I'll keep working on the relationships I want to keep. 

If you're reading this, when my time comes to die, don't worry about my funeral. I mean why come to mine, I'm obviously not going to yours. But if you're reading this and we haven't talked in a while, reach out and say hi on zoom or text or email or old fashion mail. I will try to do it with anyone else that I don't want to say things about them at their funeral whether it be decades from now due to old age or weeks from now due to corona or far too close due to unforeseen circumstances. Let my funeral not happen or be the loneliest one ever but if we're friends let's not let our life be.  If I have to do post death or death on my own, oh well. Let's share life. 

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.