To Hell With You

“But all alone his blood runs thin and doubt, doubt comes in” Hadestown

I watched Hadestown last weekend, a musical spin on the myth of Orpheus and Eurydice. It was the day after I got the bloodwork result. While I’m more tempted to sing you a couple of the songs or give my critical review of the Tony award winning musical, I don’t think that’s why I write here or why anyone read. 

On my bloodwork it was determined I don’t have any reason to believe I have any new cancer or  too serious of liver damage. I just have some leukopenia and that is what’s causing some issues. There doesn’t seem to be any solution we’re going to approach or figure out and like my brain, it’s just going to be a sit and watch and wait monitoring situation so several medical appointments later… no real progress. They thought I would be more excited to hear that there was no cancer or evidence of disease and it was my doctor’s assistant who came by who hadn’t met me so I responded with a recent oft repeated line that I’m more afraid of aging than dying.

I am relieved but not as relieved as they hoped. But in the context of that confusion I watched a musical about someone who goes to hell to save their loved one but they aren’t able to make it back because they look back right before helping them escape. Whatever interpretation you want to give is fair game but surely there had to be some one who was trying to focus on looking forward. Looking back hurting the person you love the most and then hurting you because you hurt them… if that’s not hell I don’t know what is. 

That wasn’t the part that caught my eye, ear, or heart though. It was that the reason his loved one ends up in hell was because she was asking for help but he was too focused on his own song so did he put her in hell only to love her enough to almost get her out? That’s a tough story. I’ve obviously not been great at helping people join me through hell much less to hell and back. In those moments on a hospital bed where you turn away emotionally asking what’s wrong with my brain, you hope someone is listening and that they rescue you on the way to hell not to just get you to escape. 

The balance of relationships and health and ethics and consequences were singing through my head quite literally about when I have tried to figure out too much at once alone. I know I have good friends with the vast majority of the ones who were in the hospital room still available. I was talking to someone about money and they said that after a point it doesn’t matter how much money you make, just how many people will show up if something goes wrong at 3 o clock in the morning. I am thankful to have and be in that kind of relationship with good people.

I come from a background that says there is power in the blood and so as my athleticness give ways due to blood issues it sure seems to be true. But somehow despite the fact I am not generating power in the way that I used to. I just did a 5k that during my usual days (like a year and a few months ago) I likely would have finished in the top 3 I’m super disappointed that I came somewhere in the top 20. It’s funny almost 12 years ago, I was scared because the way I’d always defined myself by my brain was now at risk and I learned to define myself more by my running muscles. Now those are struggling and I’m lost a bit, that was easy to read in the last post. 

But today, I’m seriously considering signing up for more races, perhaps even return to a marathon for the first time in over a year for the Austin marathon. I can’t decide if to take it as my final lap. Then again when at 30 I was doing it as my final lap well I’ve done over a dozen since then so who knows. But how can I not do 42 kilometers at 42 years of age? 

I hadn’t blogged in a while but the last one helped me remember while I may not have listened well enough yet to stop hell being a factor in my life, I’ve had some good people who keep leading me out. But I guess that reminds me of a cheers from there “To the world we dream about and the one we live in now!” Oh and for my expert review, in case you were wondering, my favorite part was some great female trombone solos with some serious good slick slides up and down the scale. 

 

Bailed Out

“Stuck in this game you've started, Don't leave me broken hearted 'Cause I've got nothing left to lose”-Higher

I’ve not been blogging much. In fact I’ve blogged as many times this week as I had the rest of the  year. There was once upon a time I started writing it just to remember with a damaged memory. There were times I was hesitant because for some reason strangers started reading it instead of known people and then when people I cared about were being written about more got more private, it got harder for it be raw and uncensored since they all appreciated their privacy as much if not more than most people. I’ve written elsewhere in a process where I write things out and then delete it, more of a purge than a process. 

There are other reasons which perhaps will get a blog of their own in due time or as someone who reminds that life is short and that they are hot, there are still people who think I should write a book. I doubt it would be well received because too many people still like the idea of me better than myself. But there was a comfort in hiding in public in this forum so at least for today, well I’ll try it again. 

This year has been medically rough. Somewhere late last year there started being health issues, none of which have been written around here. Something didnt’ feel right in my muscles. I wanted to dismiss it as mental but hard as I tried I couldn’t turn the mental back on. Maybe it was malnutrition and I just needed to take more protein. I changed up some eating and drinking exercises, I took off the better part a month off running after not having missed a day in over 3.5 years. I went to a chiropractor. Finally I went to a doctor where I acknowledged that I was more afraid of aging than I was of dying. They took 14 vials of blood taken in February to run some tests where there were some deficiencies in vitamins and iron. There were 3 supplements and follow up, that resulted in more blood tests and more follow ups which resulted in more blood tests, a second doctor and more follow up. On Monday, 3 days ago, I did the 5th bloodwork of the year. This year I have had the most medical appointments in any year of my life since year two of cancer. Something is definitely wrong. It could be a variety of diseases or just simply damage to my liver or kidneys having issues from heavy dosage of medication or maximum dosage really for almost a decade to keep me from waking up or the lack thereof on the side of a run as occurred once. But the only result missing from Monday’s work is whether I possibly have lymphoma or leukemia. It is possible (but highly unlikely the doctor said) that I may have one of those. The last time the doctor ordered some cancer test and said it was highly unlikely that it was something… well let’s just say it got this blog started.

I have sat here and wondered what to do. I have a DNR order and a futile care order well established. I am tired and worn out. I am not sure how much of the fighter still remains. I think i can go at least 5 rounds but could I even get to my favorite number and do I have what it takes to knock it out if it’s there again. It felt from the last brain cancer appointment that maybe I was finally getting free from prison but maybe I just moved to another one. Is there anyone to bail me out? What’s the right way to ask the bailif a question at this point? Too early to tell I suppose. 

There will be people who will ask what about Kiana. My goal almost 12 years ago was not to just be there indefinitely, just to give her some good memories and to hopefully give her the tools to be fully capable of independence when I’m gone whenever that may be. Watching the struggles of her adolescence, I’m not sure I’ve done much for either. But I often genuinely wonder if maybe her life wouldn’t be a lot better when I reflect on the fact that the biggest negative contributor in her life may well have been the tension between her parents which is zero percent her fault, much of it coming from her mother leaving in the middle of cancer with scars and staples in my head and the damage from that continuing from too many people. I also think I’ve likely never modeled any healthy relationships for her at least in the significant other category. 

So sometimes you just feel lost? And you wonder if there’s some writing on the wall? I don’t have spatial orientation anymore after surgery but recently I was able to march like someone bringing flowers to a king to a new place but I could remember it perfectly because it was next to medical appointments I had pre brain surgery. My mind’s most powerful memories are in trauma and lyrics. As I drove home from there, I got a text that some of the results were in. I pulled over to read it but it was a minor update to the complete blood count not the cancer tests. 

I don’t know what’s coming but I’m tired of the tests and the scanxiety and doctors again. I long ago said to my regular doctors that the less I see them the more I like them. This new set, one of them said that I was the kind of patient who keeps them up at night because the results are so odd. But whatever comes I’l try to focus on continuing to dream the impossible dream even if it’s an unreasonable way to tilt at windmills. And if some parts of my body are going lower, I’ll try to find some love or hope or positive emotion to let me go higher.

When Abuela and Forever Leave

My grandmother passed away a few weeks ago. There is no proper homage to a woman of that magnitude. I spoke at the funeral and a few words at the burial. I wrote things on a social media and here at a month and a half out, I still regularly cry as I process it. I’ve tried to explain to me, Kiana, others that part of it is like most people’s grandparents in her life, she was not someone who I visited or who visited me. For at least all the early years of my life, I was in her house. And unlike my mother who was an adult and I’ve watched her age, my grandmother was somehow ‘always old and yet always there.’ She is the closest reality to forever I have, what I imagine God must be like, kind, ever present, ever caring, always providing. 

She was still standing and mobile till the last few weeks due to heart issues. She’d had heart issues for a while so it didn’t come as a complete surprise at 8y years old. Still, that age means that in my life she’s always been there, feels like she was there before the universe itself. 

She was also diagnosed with cancer this year and has declined treatment so it’s been a year of health issues. She’d been unconscious for most of this hospitalization but as she’s come through she’s made it clear she doesn’t want a lot of medical treatment for this now, just to be given a chance to to heal or get to get her final rest back in Chihuahua, in the house and neighborhood I was born and raised in. Her children, my mother included, seemed to resist that. The day I visited her in the hospital in July some of them were angry that a doctor had talked to her that morning with another and recorded that she didn’t want any more treatment. They were angry because they weren’t told or invited but living in the world I know, I would guess it was a liability issue. The woman didn’t have a full education so there was no legal paperwork about those thing. 

Speaking of my mom, she was a single and working mother. My grandmother Sahara has never had a ‘job’ in her life because before she was legally an adult she started raising 12 kids, my mom being the oldest of alternating 6 girls, 6 boys. That continued to raising grandkids and great grand kids in various capacities and levels. For me, I was literally under her roof in Mexico as my childhood, never afraid of her, but if there’s one person I didn’t want to disappoint in my entire life, it’s been her. I didn’t bat a thousand and there were times I just hid my misbehavior from her. Perhaps the most infamous one of ‘not getting away with it’ is when I started a newspaper on fire 6 years and because I heard her coming I knew I had to hide it. I threw it under the couch. The reprimand was about my safety not the destruction of her property. 

I have a big head and apparently it would knock me off balance and I’d fall on it. She told that story all my life cracking up. But I also remember her after the laughter which I’d join her in that long before the brain cancer she said well you have a big brain in there. Use it. 

She has always been an excellent cook; in 42 years of life she’s fed me ridiculously excellent meals of just the greatest stuff on earth tamales, tostadas, burritos, tacos, menudo. There is exactly one time she ever made a meal I didn’t like, some vegetable heavy soup when I was very young so I just rushed through it and ate it very fast. When she saw that, she proclaimed how I must have thought it was delicious and served a second bowl. I ate that second bowl very slowly, a good life lesson. When I became more ‘modern’ I tried to take over the kitchen once and she quietly redirected me that was her territory and to go sit down; I did as I was told. In the first and only road trip I’ve ever taken Spring Break of 2021, the first stop was to visit her on the way to a few other things. At 86 years old, she still insisted on making us a meal. That road trip included national parks, great restaurants, mountains. The only picture I printed and framed from all of that is the one with her, my grandpa and Kiana.

There was an ever growing number of grandkids and great grandkids. I like to think I’m the favorite and have always taken it confirmation when I was the one chosen to walk her down the aisle at her and my grandfather’s 50th anniversary. Two years ago, summer of 2020, was supposed to be a huge party for their 70th but it was made very small due to covid restrictions. Never removing my mask, I made sure to make it. When I visited her at the hospital, as I hugged her goodbye, she said I was always one of her favorites. I actually shared that story at her funeral to the groans of the audience but finished the story that when I said it to my cousin, he said that’s what she tells everyone. 

We share a cell phone plan that had to be upgraded in the middle of this pandemic because my grandmother’s data usage exploded during quarantine. The visits from the family and friends greatly reduced out of precaution. While for some of us it was binging on some old or new shows and movies, my grandmother’s screen time increase  was from constant viewing of sermons. God had to bless her soul for how long this matriarch has put up with all of us. Somewhere I have a hope that the Ruler of Universe is as thankful about people like her as the other way around.

I ended up getting her phone after her passing to try to clear it out and there were almost no original pictures on it, I realized that because one of the most recent ones was one of Kiana from an event she wasn’t at but it had been texted to her. Her camera was mainly a photo album of pictures she’d saved. Oh also, tons of sermons she had downloaded. 

Ironically enough, the heart attacked that got her near the edge, it happened as she returned from Chihuahua to West Texas and was in between the two in El Paso. In the border, at the pass between the two countries she’s lived in, most of her children and grand children are now on this side of that river but she wants to go back and rest where she was born. 

When I heard about it, I almost didn’t go because I knew I’d kept a good relationship with her. As I’ve traveled my own journey, I’ve seen a lot of people who think a last goodbye is important. I’ve made it a successful goal to always call and visit her and say hello. I don’t know what’s coming but I was thankful for 4 decades of Hola with my Abuelita. But when she came to, she called and said, my fingers work, my toes work, my brain works, my mouth works but the engine is giving out. I flew there the next day. Kiana as unable to go as she as at her mother’s home just having caught covid.

She was tired when I arrived, trying to get out of her hospital room with an aunt saying the nurse wouldn’t let her. I made sure they let her but after just one lap of me pushing her, she was ready to rest. Her heart was at 20% and she was wearing an oxygen mask. I flew back that day and did the crying on the plane, figure it was past her time to comfort me. 

I made arrangement for Kiana and I to fly to Chihuahua about a week later, where she would head to be in hospice. Unfortunately, she died the day before we were headed out there. She had another mild heart attack the night before but when your heart was already at 20%. She stuck to her position and didn’t take any more treatment and wouldn’t use a machine to stay alive. She had been eating good solid Mexican food in the house she raised me in for the last few days with children, grandchildren and great grandchildren present. She was tired and the family that was around her didn’t know what to do, who does when someone that they love is near dying. They sang hymns and she was like can you all just be quiet and let me rest. Somehow it seems entirely appropriate that her final words were in essence shut up and give me a break for once. 

We’d get there on the funeral day where 1 by 1 all of her 12 kids (9 themselves and 3 by their children) spoke about her. There were 12 very different human beings with different stories despite having the same parents, same town, same up bringing with different reflections. Then they opened it up to various speakers. I ended up being the final one highlighting more her humor, not minimizing the faith that had been highlighted about how this would all be okay cause we’d see her again but asking that between now and then, that we live up to her legacy and honor the memory of her with our lives. Kiana had painted a picture of her which was given to my grandmother and they put it on the casket during the service.

It hit me the hardest later that evening when we were back at her house. Somehow though I spent years in it and visited lots afterwards, I never thought of it as my house or my grandparents house, it was my grandma’s house. Perhaps because my grandpa would often be gone to work in the US or elsewhere for a while. Perhaps because the kitchen was always where she worked and directed. It was at that moment when she should have just come around the corner and told us that food was ready or what to do. In that moment was one of the biggest cries of my life. I went outside and took a walk and the neighbors from across the street who were still there from decades ago offered me a shot of tequila. I took the first and passed on the second. 

It was Kiana’s first visit to where I was born and I’d show her some things old and we’d discover parts of the town together. That may need a reflection of its own but I just kept thinking about that forever was gone. My grandpa has gotten his first cell phone since then at 91 years. I’ve called him but we never really did speak on the phone much and I struggle with what I’m certain is a fraction of what he’s dealing with, why can’t I also talk to my Abuela when I make that call. 

I know and can only imagine that my pain is a fraction of my mother and aunts and uncles or even the cousins who she raised longer because of other single parents. And that it’s a grain of sand on the beach of my grandpa who spent 71 years next to the most wonderful person I’ve ever met and they shared a bed till the last few days. I miss her. But I’m thankful that my grandmother loved me forever and that’s how long I’ll love her back.