New HPRP gammons blog posted

New HPRP gammons blog posted


Enjoy

Sunday Papers!

Hello everyone!

It has been almost a week since i have posted anything so there is some catching up to do, Buckle In!

Thursday was the last day of both chemo and rad, 6 straight weeks of Monster 1 and Monster 2, with 5 days a week of radiation being shot into the side of  head, (radiation takes weaken the weekends off for some reason [odd]....). Even before the treatments stopped i was feeling some significant effects, I mentioned previously that there must be some critical mass that is hit and causes the body to start reacting. This is really a significant issue that they neglected to mention.

Just about everything that they warned me about has come true, thrush, soreness, nausea, boo-boos that won't heal, taste buds don't work except for salt, sugar and sour, and SLEEP!!! The sleep factor cannot be understated. I get theses waves of needing to sleep about every 4 hours, not just drowsy but a full blown I must sleep now... feeling and I will go down for a couple of hours, wake up totally disoriented and take a half hour to figure out my situation, where was i how long was i out what am i supposed tot be doing right now as well as an emotional anchor dragging around my neck, this is pretty difficult to deal with. Thanks to B for being so understanding and helpful during these (and all other) stressful times. She is the one constant to me, not that other people are not, but when i turn around she is there every time with help and patience all the info that i need to help answer some question about some subject that i do not know the details on, as well as unconditional love, caring and concern. She is AMAZING. 

 So, here's the therapy timeline as it stands now for now, 28 days with nothing except necessary as needed medicine (anti biotics, headache and others) but no Monster1 or Monster2. During this time i am scheduled for another MRI which will help determine if there is to be more radiation or surgery. Regardless of the MRI results i will begin chemo (both monsters) at the end of the break.

    ;~
               ./|\.
             ./ /| `\.
            /  | |   `\.
           |   | |     `\.
           |    \|       `\.
         .  `----|__________\.
          \-----''----.....___
           \               ""/
      ~^~^~^~^~^`~^~^`^~^~^`^~^~^
       ~^~^~`~~^~^`~^~^~`~~^~^~

I have been thinking about collecting things, not starting collecting but things i have collected over time.

How much enjoyment i get out of certain things, right now as i type this i am listening to Fun Lovin Criminals, a great band from NYC, i have collected all their music, hardly anyone knows them, B knows some just because i push certain songs, (she is also great at humoring me!) I have a ton of music like that, and eBooks on Physics, and some eBooks of what i would call important fiction. They say that speaking in metaphor  is a higher form of communication. A metaphor allows you to express a complex idea in a more succinct manner. Think of it like this: I say Life is Like a Roller Coaster, and without explanation you understand the idea i am trying to get across, you could respond with But a Rolling Stone Gathers no Moss. The complex ideas get communicated more efficiently than if we had to explain the ideas behind the metaphor. The important fiction is like that.

I guess what i am getting at is that what i collect or amass over time has no real value outside of me. I want to share it all so my kids can enjoy or see the importance of these things. Over a lifetime you can share these things a bit at a time, who knows how much time me or ANYONE actually has. It is hard to accept the uselessness of some actions, when after all this time these things have been important. I have a chess book that was printed in the 1860's. Think of that, hand set type (in reverse cause that's how it was done back then), chess notation, it has no value (or minimal) but it is one of my favorite items.

I have to resist the urge to push what i see as important or valuable on those surrounding me, oddly it creeps up with a certain intensity, "I need to show BigADL this he can use this", but no. He's a big boy, the Dynamic Quality i posted about previously has to be organic, the quality exists for the consumer.

Ramble ramble ramble....

Thanks for listening (and listen to some Billy Bragg, you will love it)

Mysterious Ways

Since this last week of chemo and rad have begun something inside has changed. It is as if some sort of critical mass has been reached and the body is ready yo do what it needs to do with all this treatment that has been happening. As if it has been storing it up for the next 28 days or so.

A dozen different things are happening to me as side effects. Remember how positive and strong i said i have been feeling? Well lets just say it positive and strong are not words i would use to describe myself right now. I am feeling weak and sick and depressed and generally run-down like i could go to sleep for a long time. I know it is just another phase of the treatment and i will get through it, i do know that. But each moment is a chore right now, and i want nothing to do with it.

I received a certificate of RAD completion from Dr C's office this AM. A couple of days early but that's fine. I can hang it up next to the boys baseball pictures. Yay.

I am starting to wonder what it would be like to die from GBM. Is is a light switch or is it like that tiny thread of disappearing that i described previously. Can it happen while i am sitting here typing? Just fall forward and hit th hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh key with my nose untill someone finds me?

I saw a picture a couple of weeks ago (on G+ of course) of a young man (15 or 16) taken about a year ago, he also had the GBM, odd thing is when i first found their posts i thought they were a month or so behind me, July 2013, of course i missed the detail that the post was from July of 2012.

The picture was taken by a family member as they were loading him into an ambulance from his home. This was obviously a pic some one took as they were taking him away for the last time. He was just a kid. I keep seeing this image in my head, outside cold daytime ambulance stretcher family kid covered against the cold condos.

 What was it like? Even a final moment has a final moment.

¡¡¡ Side effects and More !!!

For a couple of days now i have been through some pretty significant physical side effects. I guess with a week to go on the chemo and rad the monsters 1 and 2 needs are reaching some sort of critical mass in me probably in preparation for 28 days of no monster meds.

I seem to be getting mixed messages from the physicians i am working with . Differing information from both previous communications and from each other. It works like this: early on in the process i was told that all little boo-boos i get will be slow to heal and prone to minor infections, so i need to be conscientious about taking care of cuts and scrapes. Today when i mention it they both go "Never heard of that...".  Obviously they are willing to help and discuss any issues i bring up, but the different information is a bit disconcerting. I remember being told....just not by whom.

The worst yet was yesterday morning when in a sound sleep shooting pains started in both knees and woke me up. It was in incredible feeling that made me whimper. This morning, again, although i dosed myself with Aleve before bed is is more manageable, pain through both knees.  One of the physicians has (this time i know which one) told me that the steroids can cause joint pane, and that until i uncomfortable we will keep steroid use as it is. I see this particular physician today and will certainly bring it up. Although yesterday's other onco visit he told this wouldn't be from steroid use..... There seems to be a gap in information from physician to physician.

I got a text yester from BigB asking what we were up to and inviting me and B out with him and P, (sorry for all the initials!) for a chillaxin. What a great time, to be away with non-illness related business to tend to, swapping stories and just laughing and enjoying each others company. I didn't even realize how much i needed it until after it was over and B and i were driving home and it hit me that i (we?) are so wrapped up in this issue that life itself passes by, even when i feel great, and we forget to enjoy just time spent. Thanks again BigB, you and P did a lot more than just get me up and out (and pay).

This weekend we are going to Mio to go tubing. It used to be a yearly event but fell off somewhere, this year it is back with a vengeance. Saturday is forecasted to be 81 sunny and 10% chance of rain. That sounds perfect. We have an 8ft  party island that seats 4 adults or however many kids you can stack up, i think about 8 tubes, and someone is bringing a canoe, (can't wait to see that :-)  )  Got new fishing poles for me and the boys that are finally gonna get wet, even if we have to stay later on Sunday, this time the boys and I are gonna feed the fish by the dam. Sissy and D are both going! I don't think either one has ever been...(a lot of cloudy memories of tubing at Mio). This is gonna be a good one.

                        )
                       (
           _ ___________ )
          [_[___________#

Last week the issue of time came up. I guess it is inevitable to ponder is this thing really going to kill me in 2 years maximum? (According to SSI). Who knows, we cant check progres until my current protocol is on the 28 day break. But does that mean that we just sit here and wait? Of course not, but what do you do? How do you prepare to die, especially if you have no idea when it will happen? Try as often as you can to ensure the littlest ones know you love them and set a good example. Is there more? Please post.

For the non-children in the group? I will do what i feel is best, as well as show respect to your concerns, but i have a pretty narrow focus, for right or wrong, so how i allow myself to be myself is narrow as well . Please understand that since you are the adults i feel you should allow some consideration? and not take my steroid induced mood swings and my seeming inability to track details personally, unless you like being the victim, although there is something noble about being a martyr.

Back to planning or preparation....Remember the books that Little S gave me for the kids? One of the hardest things i have ever had to do was open the cover and put pen to page. I have started but WOW. Once i get going there's no stopping me (look at the size of this post already). I guess that that process is cathartic, figure out the hardest part first, then allow the rest to come through. They're not supposed to be sad, more conversational and stream of consciousness than anything else. Thanks again Little S.

I have more and more but i will save it for the next post. I believe that this should be a 2-parter and will finish if off soon.

Thanks Everybody!!!

/

♫♫♫ Good Times - Bad Times ♫♫♫

...you know I've had share..... Name that band?

I used to love some very specific music, when i was younger music was energy. Everything from my very first copy (on 8-track) of Sabbath Bloody Sabbath, to the 4th time I purchased Frampton Comes Alive on vinyl (remember: do you feel like we do?).

The reason i am writing this up is a bit existential, so i don't expect everyone to care or read through to the end. But i feel the need to clarify, even if it's just for my own sake. Although if you make it to the end there is a relevant point being made

Quality starts as a dynamic force. When you see or hear something that you appreciate there is a Quality that you experience that attracts you, even before you analyze what it is you like, the Quality is present. Once the experience has been analyzed the the Quality becomes Static, meaning that your definition of why you like it becomes the reason you like is, not the dynamic quality that you first experience. The shift from Dynamic to Static is a sliding scale, it happens gradually as you continue to re-live the experience that gave you the initial Dynamic Quality thrill. As the scale shifts irrevocably toward Static Quality something else changes as well. The feedback from yourself changes, you no longer have the urge to share the Dynamic Quality experience with everyone like you did the first time you experienced the Dynamic Quality.

So what happens? Why the shift? The stimulus is the same, right? Note for note it is the same, (unless your vinyl is getting worn out). The Static Quality is still there, your definition of why you appreciate it is still applicable, hell, you still love the song, but something has changed. Remember that the Dynamic Quality happens before analysis, (a priori if you will), it is an instinctual thing, after the brain kicks in you start to ask what is it about this that has the Quality  that attracts me.

Something to remember at this point: The Quality Object we are referring to has been created, I need to exclude organic objects for this reasoning to hold, I am not referring to a sunset or a perfect summer day. The objects i am referencing have been engineered to elicit a response. Like a song or an event or a painting.

Alright alright.....This has been writing itself for like 3 days now, I will step in and offer guidance.....

Can I just leave you with this:

MOQ, or Metaphysics of Quality is an original idea by a contemporary philosopher named Robert Pirsig. His initial book called Zen and the Art of Motorcycle Maintenance,  lays the groundwork for MOQ (and is an inspiring story about a father and son motorcycle trip). His second book called Lilla is an amazing piece of of original philosophy, I cannot recommend it highly enough, read it if you can find it.

Quality upon reexamination has other items that have been introduced by the individual, not all of them are for the consumer. Some constructs are there for the benefit of the creator and once the initial Dynamic Quality slides into static, other emotions come into play from the consumer side.

TaaDaa

Sorry for the long winded road to a book plug.

Ticketing System

-------BORING ANALYTICAL STUFF--------

In which the author attempts to make himself feel better by

removing all emotional context from his condition

It occurs to me this Tuesday morning that all trips are one way.

Regardless of your desire to return to your starting point you will return to your destination a different person based on the adventures from your journey.

This has been percolating for a few days for me. I remember my surgeon tellig B and I before the surgery that some effects from it would be permanent. Specifically he was referring to the aphasia. Our discussion on it was brief but direct and to the point (wonderful surgeon, Dr Soo).  (Hey B! Remember discussing Broca the other night?)

Anyway, the one of the areas of the brains that were harmed by my tumor is indicated by the green circle in this diagram:

Damage to this part of the brain causes what is known as aphasia. Characterized by difficulty choosing proper words from the word-storage-thingy in my head, as well as propositional word misplacement, i mean how specific is that?!? Therapy is supposed to alleviate some of the effect that is required to put together comprehensive thoughts and ideas. We'll see about that.

Part of the one way ticketing system says that somethings will never be the same. Oh, i can analyze a chess board (position, not design of the board). Win bunches of games, set up a network, I can configure RIPV2 (with notes), reconfigure a desktop system for SLI gaming, no issues with analysis at all. Just communicating those ideas to the world. There are some other cognitive effects that I can't quite define (duh) so i will not go into the description until i have the proper vocab in order to not mislead on the extent.

All aboard!

Some of you are saying what's the big deal? Well the big deal is that me and my brain go waaay back. We've always had a semi-adversarial relationship, i mean it keeps my heart beating, my lungs filling with air makes my hands move when i want all the basic stuff is reliable, the problem i have always had with my brain is it never shuts up. Blah blah blah always got something to say, like Homer says "Shut up brain, or I'll stab you with a Q-tip", now, i think it's got me in check, not mate yet, but it certainly has a King-Rook fork. Check out the giant chess board D and I put together on G+ (and if you're not active on G+ it would be the perfect time to sign up!).

So back to the one way trip: I have a bit more than 2 weeks of therapy to go. After the rad treatment the brain will simmer down for a bit, get back to what it would be a non-irritated state (take that, brain!) In it's non-irritated state they will do an MRI to check the nominal status of it's condition and take appropriate action. This is where the train leaves the station destinations are limited:

• My new Normal 
• Progressing
• Some sort of stasis that require continued treatment for maintenance.

My fear is more progressing, how much of my word-keeping-thingy can you take? What happens next? Next? Then what?

I remember when i checked into the ER, how distant i felt, the connections to the world were tenuous, the brain was fine i was there alive and thinking but the connections were weak there was a distance that i could not overcome.. How weak and far can they get? This is a one way ticket.

Is that all? Really? Not too dramatic from the inside.....

GAMMONS and HPRP and USUAL SUSPECTS update posted

Sunday Papers!

-------------->EXISTENTIAL PONDERING<------------------

I remember being 6 or 7 years old (hello 1970!), and getting the paper everyday in the morning. The Detroit Free Press was the paper of choice in my house, it came before the sun came up, my mom would always be reading it when i came down and got ready for school. She always had her left hand over the cup, and i remember seeing the steam from the hot coffee rising fron between her fingers as she read the Free Press. What a vivid image that is this morning.

So Sunday morning papers are hardly around anymore, they're available of course, but all the news is already old. I still enjoy reading the paper but just for the details that MSNBC or FOX leave out. It seems that all the details are in....well, the details.

Ernest Hemingway (drunk, misogynist, author and  hunter in that order I think), said that

Every man's life ends the same way. It is only the details of how he lived that distinguish one man from another.

Not quite brilliant, but he makes a good point. I am trying to show my boys as best I can that being positive and funny and strong are the right qualities to grow with you. This is a detail that I want to live with.

Especially now.

Meanderings!

I visited my office after a month of missing work on STD (ha ha). It was very cool to see everyone, it looks like they have had no trouble filling in the gap i have left behind. Which is important, no single piece of the machine can be so essential that the machine fails. I only wish, in retrospect, I had created better documentation on process, function and configuration. There's a goal for my return.

I started my 4th week of treatment on Friday. Only 21 chemo and 15 rads to go. Then a short hiatus an MRI and an assessment to go. Side effects have gone from nothing to minimal. Ahh progress. Sleeping is a chore, i cannot stay asleep for nothing, unless it's the middle of the day, then i can drop out for 3-4 hours no problem. We have come to call these Dog-Naps.

I refilled my rx for the Temodar on friday and there was a sticker on the box I found funny here's a pic:

Tough pic to take considering all the factors involved (construction on 94, speed zone, tumor....)  but i got it!

I just wanted to say hi to everyone, not a bunch to say that hasn't been said already. I hope your weather is nice today!

Jeff