Let go, let...ME!

This occurs to me on this July morning....

While I was trying to get myself into the ER at Providence I was aware. By aware I mean I was functioning cognitively, I was in the moment and had aims, points, expectations, goals and things I needed to get done. I was expressing these things to the people around me, from my manager, KD, to back-up On-Call-Girl, SC. To B on the phone, all the way to the 3 physicians, 5 nurses and countless techs...I had the desire to communicate and was choosing to do so.

The wonderful people at the ER had no idea what I was talking about, based on their training and skills they knew something was wrong, that I wasn't just a buffoon (!) walking down Dequindre looking for a hand-out. To B on the phone, I am not sure if I even expressed that I was in the ER. Despite my intention and desire (will)  to communicate what I was feeling, internally the skill set was evaporating, while it was in use.

There was a certain amount of humor involved. (Where do we find the capacity to laugh in certain times?) For example, I could not get my age right, I am told i kept telling them I was 27. Hilarious.

But to my point of this page....

As I was laying in the bed at Providence that morning looking out through my tunnel, I could imagine this would be how it would end for whatever-this-was gone mad. I was peaceful, I was making people laugh, I didn't hurt at all. Shit, I'll go as far as to say I felt stoned. I felt as if I had eaten Mushrooms. It was not unpleasant. There was just a simple disconnect between my internal processes and the world.

There seems to be a connection, an active connection, between our internal world and what we view as the Real-World.

Remember the story Plato tells of interacting with shadows on the cave wall? (Look it up if not...) As the fire dims and our ability to perceive and interpret and interact with the shadow fails we don't feel a failing, we simply continue to interact with what is available, until there is nothing but embers, too insignificant to cast a shadow, at that point there is nothing left to interact with and we are alone.

Mornings are when the bills get paid...

In these early July mornings the humidity is like a color that covers over the air. A heavy dark feeling that covers everything. Take a picture and it would look perfect, the camera can't see what the air feels like. This is how we look forward to Next Summer. Our snapshots remember a perfect morning. These days when I wake up it's nothing but a heavy dark color. It's chemical conditioning or it's physiological reflex or it's a tangible object, to me, right now it makes no difference. It's morning and I am Sisyphus.

I can't point to anything in particular that weighs so heavy, because until I get my meds digested EVERYTHING weighs so heavily. That makes the meds the problem right? Whoever answered yes to that stop reading this blog, you lack the ability to analyze. We can argue about it another time. Cretin. These days this is a sore spot, plenty will be said in the near future.

So back to the mornings....It is what you call a picture perfect day, no clouds, mid 70's and quiet out except for a little traffic on County Line. Even the traffic fits into the picture, again with the picture. That's only 1/2 the story. The rest of the story is more complicated.

R seems to have an issue with the scar on the side of my head. It is ugly and it's only going to get worse when i start the radiation. I am trying to engage him with it, see if he thinks i should maybe get a mohawk or just some sort of pattern on both sides, but he knows that once the hair goes the scar will be standing out. When we talk about it I see him disengage from our conversation and run through thoughts, come back to us and be distracted. It takes about 1 second for that process to happen, but when he comes back he's in a different state. I don't know what to do.

M on the other hand is great with the mohawk, he suggested a mohawk-mullet. He lol'd me with that. I was thinking something like this....

Not quite my style, but neither is GBM, so lets give it a shot.

Here's a pic of one of the monsters chasing me around now...

Not sure why i have a picture of the box??? Maybe it's because it cost my insurance company $11,500.

It's all about the blood-brain barrier. Got to get the meds through the barrier to treat the tumor. Right now, aside from complete infusion Temodar is the drug of choice to get to the affected space. We are going on a study medication that is currently being used to treat renal cancer that has shown some hope in treating the GBM. I have not read  comprehended the complete study so the details are a bit fuzzy, but it appears that Temodar and Drug 2 pass through the barrier at the same time. This is why they directly overlay the treatments timing. The study still leaves me three options for Trials after the first course, (upon recurrence).

Speaking of Studies and Trials. We are all set, thank you. I understand the desire of my friends and acquaintances and strangers to want to help us with this issue. I also understand the benefits of wheatgrass to the body. But we have chosen a course, discussed it between B and I and come to the conclusion that....

1. First of all there will be no recurrence
2. Participating in the Study is important. Having an opportunity to contribute to the GBM body of knowledge is something that makes me feel good.
3. I am a technician at heart. I analyze and quantify and try to extract empirical data whenever don't understand something. Name it and claim it. No better way to do this than have highly trained medical professionals measure and treat and react and adjust.
4. I am as anti-pharmaceutical as the next person ($11,500? really?) BUT I truly do not believe that there is a motivation in keeping people sick. I believe that there is money in a cure, of course, BUT it's one step too far to believe that they would avoid a cure in order to keep sickness around. Think they wouldn't charge the $11,500 for the cure? can you spell p a r a n o i a.
5. Wheatgrass is the perfect balance of nutrition, palliative, and ameliorative ingredients.  To keep you healthy. NOT TO CURE A FREAKING TUMOR.

Sorry for shouting...it just seems pandering and dismissive for someone in perfect health to share their thoughts on wheatgrass. Rude, my family is going through this by ourselves, you go ahead and "think outside the box." I will be working with some of the brightest minds available, right here, inside the box. watching what has an effect, what doesn't and reacting to any changes that the tumor shows.


OMG how time flies. The boys are getting up and asking for oatmeal and scrambled eggs and sausage and chocolate milk. Time to get moving on the day.

Wash off the thick gray humidity, drink some coffee. Wander into the bedroom and sort out the pills for the day. (It really looks like a bowl of Lucky Charms when ready to take, marshmellow goodness!)

Independence Day

R and I played a full game of chess this morning.

He remembered the rules, how to set the pieces up and everything. White to the right and Queen on her own color. He remembered Castling, pawn can move two squares on the first move.... I was impressed. We hadn't played in months. Before the game was over all the boys were standing by the table coaching him. I didn't realize E and R knew the rules also. M was a bit hesitant to play. I thing (over analysis alert:) M was hesitant to play against his younger brother because he didn't have the confidence he could beat him. I had noticed this before: he knows the rules and how the pieces move but he doesn't seem to want to take the chance of losing to his younger brother. I have mentioned to him before that I would love to teach him how to really play the game, strategy, position and tactics.  I would be SO proud to have two chess players in the house.

Just gave some money to the kids so E and D can take em  up to get some fireworks of our own.  Neighbors do a great job,  plenty of $ spent on boomers. Big ones too. I remember doing the hustle of setting  up the mortars,  trying to get some correspondence and some timing of the different types of devices. That was fun.  These days,  I believe,  I'd rather sit back and watch my boys get everything they can out of it. Is it age creeping up on me when I say I'd rather watch them get lit off than do the lighting? Nah, it's scientific, it's what we call the Conservation of Matter and Energy, if it don't matter then I'll conserve the energy.

Seeing all the kids pile into the back of D's car and head off was quite a site. Even aunt S piled in the car. To much excitement for one vehicle. Hard to see how anything will get done with that many little brains running around looking for colorful boxes that have explosions on them.

After we blew off the few firecrackers we had all the boys wanted to run around the street and look for crackers that had 1/2 a wick left to try to lite them. They called them excities,  great word for the feeling you get trying to light a wick that is less than an eighth of an inch long. I remember having the Black Cat crackers as a kid,  they seemed so much stronger then. I had one blow up in my hand once,  I remember the tingle and the numbness lasted and lasted.  The scary part was my what if my MOM  found out.  That's the way it always seemed to be, perpetual state of fear of her.

My B is not here this evening.  Her business takes her away for a few days,  shame it has to be on a holiday. I wish she were here to experience the quiet moments before the explosion of kids,  black powder and iron phosphorus. The temperature is perfect,  the light is perfect,  the sound level is perfect. I am going to start a seperate blog about the Work issues.....

The only thing necessary to experience complete happiness is to not compare this moment to any other moment. Simple.  Right?

PROVIDENCE: The Protective Care of Nature as a Special Power

I was afraid it was a stroke.

In my mind that was the worst of all possible problems. Little did I know that there are fates worse than relearning.

One of the funniest people i have ever heard speak was named Patrice O'Neil. He had this conversational pretzel-logic that was hypnotic and rational and made perfect sense, until he was done talking, then you would go "what the fuck did he just say? He could explain and rationalize anything from any viewpoint, racism, sexism, fish-tank care (really). Funny, funny man. If you have time watch this video...

Anyway, Patrice died died after a stroke about 1 1/2 years ago. He was what kept going through my mind. Died after a stroke. How can that be?

The good folks at Providence determined pretty quickly that this wasn't a stroke. I am not sure of the specifics, it seemed that they found out within an hour that I was stroke free.

 I guess that this....

is not what a stroke looks like.

1.5cm mass.

Oh, I've got pictures. My surgeon was kind enough to take pictures of my brain during surgery, before and after photos show off a big difference. As soon as i am more comfortable with this bloggy-thing i will find a way to publish them discretely. They are fascinating.

Things I want my kids to learn about...

Energy and Matter are Equivalent.

I know it sounds like an odd wish. But think about it this way.  e=mc(2) is one of the most advanced scientific notions we have. If we use that as a STARTING point for knowledge rather than ultimate goal for understanding,  where could we be in a generation or two?

Gratitude

What an amazing feeling. I do not know where my gratitude has been my whole life, maybe something was growing in my brain and affected my ability to feel and express it. Maybe it's the meds I am on. But the gratitude i feel for the people around me is indescribable. Literally.

Chess

I have said it elsewhere in this blog, I know. But nothing would make me prouder than to have a house full of chess players. Just comfortable and casual chess. The quiet thrill of setting a trap and waiting to see if your opponent bites is thrilling.

Inner Peace

I know, i know. But the ability to not be at odds with yourself over decisions makes for a healthy mind. Regret is a horrible emotion. You can be affected by regret to the point of physical effect and not even know it. Choose and be at ease.

Birthday Wish

Reesey asked what he should wish for when he blew out his candles.

His first idea (to me)  was to wish for no tumors, then he caught himself,  backed up a bit and said... How about no bad tissue?  What an awful way to be thinking on your 7th birthdays.

Start your engines....

Ominous Music Plays--I have had some headaches popping up on me for sometime now 2 to 3 times a week), not debilitating but the OTC stuff wouldn't touch it, they were severe enough to go see my PCP. He did MRI and xrays as well as some other tests to measure blood flow) and could find nothing, he was thinking arthritis or degenerative disk disease, as much as I didn't want to admit it the late 40's were here and either one sounded plausible to me. He wrote me a script for Vicodin to use as needed for the pain.

I read a lot. I have an app on my GS3 (Aldiko Book Reader) that allows me to read any book in ePub format. I have so many books I am interested in right now on my phone. Never fiction, I read cosmology, anything by Brian Greene, anything by Christopher Hitchens, physics, psychology, some history, occasionally self-help (Salt, Sugar, Fat is one of the most interesting books I have read in years). The book I was reading when things started changing is called "The Clockwork Universe" by Edward Dolnick. It is the story of how Isaac Newton saw a need for a new type of mathematics and went about developing Calculus. It's not about Calculus, it's about how one man came up with it. One man and that mathematical language he developed describes the universe in motion. AMAZING.

MAY--While reading that book on the smart phone i noticed that the words were becoming mixed up. They were still crystal clear letters but the letters were moving around on the page. My left eye would see the word and my right eye was inserting extra letters into it so the word made no sense in my brain. I began to actually say the letters out loud and try to figure out what the word was. I started to become concerned, I was thinking that the late 40's were creeping from my headache to my eyesight.

I am in IT at a large health system and there are only a handful of us that smoke, literally somewhere between eight and ten of us bump into each other in the "smoking lounge" across the street. One of them happens to be on my team, BR. Naturally while we are out smoking we chit chat a bit. I described what was happening to my vision and she said make an appointment and get it looked at. I ignored her. I am a tough-guy. There's nothing wrong with me, anything that is wrong will go away. Simple.

The weekend of May 25th there was a dramatic change in my vision. I was totally unable to read words, i couldn't even spell them out correctly, I couldn't understand the letters into words anymore. (In retrospect this was the transition from pressure on an ocular nerve to something that affected my ability to use cognitive skills, although at the time I still thought of it as visual in nature. I finally broke down on May 29th and made an appointment at an optometrist, they made an arrangement for me to get in in the afternoon. I used the expression "dramatic change in my vision in the last 48 hours" several times during the calls and appointments. At the optometrist three people met with me and did tests before the DO came in, the net result was a hand written rX for reading glasses (1.5x). I stopped and bought them from the local CVS. WOW what an improvement the clarity and focus was impressive. but the letters and words were still moving around.

June 6th--On June 6th I woke up with a remarkable headache, enough for me to take a couple of Aleve with my first sip of coffee. It was a normal Thursday morning + headache. Before leaving the house nothing else was remarkable. Beck was up and out the door as I was preparing to leave, snuggling with the boys and whispering about how few days of school were left before summer vacation. (Reesey was excited about "field day" on Friday. Both boys always loved the field days events at school. There are all kinds of outdoor activities, tug-o-war, races, obstacle courses, all kinds of stuff.)

Traveling--This is where it gets interesting....In retrospect I remember feeling a little bit spatially disoriented. Almost dizzy and needing to focus on my driving rather than listening to Opie and Anthony podcast like I do every morning, my actual recollection of the events is still pretty foggy. I have come to put the events together through a series of snapshots rather than a sequence of events, I can shuffle the snapshots up and put them in any order, but this is what I believe transpired... On a side road i remember driving straddling center of the street and seeing a car come toward me, i moved to the right to allow us to pass by, when i got to the correct side of the road i glanced in my rear-view mirror to see the car going past, my right hand mirror clipped a parked car's side mirror, holy shit, I thought, that was weird. At that point a car layed on a horn an just held it. I remember thinking "what the heck?". It turns out that I had just blown through a stop sign and cut off the person that was beeping at me. Still, I wasn't overly concerned, I thought I was tired and just needed to focus.

CSB--I did manage to wind up at work by 7:20 or so, I recall no other events enroute. I got my usual parking spot and everything. I went in to the office and fired up my PC to begin dealing with the 100+ server alerts and eCW enquiries I get overnight (not as bad as it sounds). I remember watching my PC boot up, logging in and getting presented my desktop. I was unable to see my mouse on the screen. I had a pulsing light in the center of my field of vision, the periphery was fine, it was only in the very center. I had to move my mouse around without following it, so it would move to the edge of the screen then move it back to the center to try to click on something. I began to feel nervous. I did not know what to do, I couldn't decide what to do, my ability to DECIDE was vanishing, i remember being acutely aware of the fact that i was unable to make a decision. I did decide to do nothing for a few minutes, just sit and relax maybe everything would straighten out. I do not know how long is sat there before i managed to get up from my desk and go find my manager KD. Luckily she was in her office, i walked in and sat down and told her i needed to go to the ER, i am having trouble seeing, speaking and  making decisions. She asked that i find the back-up on call person and let them know that i was going to the hospital. Luckley the back-up-on-call-girl (SC)  (:-) was at her desk by this point. I said "i have to go to the ER, please take the pager...."

Decisions & Decisions--Made it back out to my truck and sat down in the drivers seat, trying to figure out what to do next... drive? where?... call? who? walk? (er is literally across the street?) I sat there with motor running for i do not know how long staring at my phone, the obvious thing would be to drive across the street to the ER, but then I thought i would callBecky first and let her know no, wait i should just drive, what if its a stroke while driving a stroke wouldbe bad. If i walked across the street I could use the walk signal, that way i wouldn't walk into traffic, hey an email just camein...Stroke? Game over. WTF?

ER_Oaklan--I wound up in the St John Oakland ER, I drove there but do not remember anything but parking, which was right in the middle of the parking spot and deep enough in, you would never know by the park job that the person who parked there was unable to decide on anything. I chose a door to walk into and tried to find a place to check into the ER. The signs were confusing, arrows were pointing in different directions so i kept following the arrows and the word emergency. After doing the circuit a couple of times, I just stoped at a counter and explained, I remember saying "I'm not sure if this is the right spot...." The woman behind the counter got me a wheel chair and helped me down, she asked me to describe what was wrong, and i couldn't. I didn't have the right words at hand, I had a lot of words, but i didn't know which ones to use. ( I keep thinking of it as one of those refrigerator magnet toys, with the individual words as magnets and they're all kind of stuck together, you need 4 - 6 words for a sentence, but as you pick one up there are  8 words stuck to it and can't figure out which on to use.....I was getting scared.). This whole time i was holding on to my cell phone, the nurse asked if i wanted to call my wife, I did. I do not remember the conversation, i know that after we hung up the nurse asked me if Beck was on her way, "I don't know". She redialed Beck to ask if she were coming down, of course the answer was yes, she was walking out the door....