Dainbramage

Your new Buddy?

Hey everyone.   I wanted to pass on a radiation update.  The treatments are going fine.  They can generally get me in and out of the room in less than ten minutes.   The mask is not an issue anymore. 

I have not felt any of the nausea or fatigue that sometimes come with the treatment.  I am really excited about this as throwing up has never been an activity that I looked forward to or found pleasure in.  I might see the beginnings of some hair loss but I am going to reserve full judgments a couple of days.  My testicles are now chartreuse.  I don't mean that they look a little yellow.  I mean they look like a spinner-bate.  If you could rig them with a line and hook they would probably catch bass- not that anyone is going to be casting by nuts soon- I am just trying to give you an appreciation for the color.  I showed them to the doc.  He looked and then left the room.   I heard him through the door holler out, "Damn you got to come see the balls on this guy."  Over the next hour I (they) were examined by the entire oncology office.  At long last my doc came in and asked me if I had done any naked spray painting lately.   He suggested I not touch them.

I was blessed with another vision this morning while I was in the office.  Another patient came in and mentioned to the waiting room that he had a new buddy this morning.  Realizing that he was standing alone, he explained his comment by lifting a large plastic shopping bag.  Out of the top of this bag came a clear hose that disappeared up the leg of his shorts and ...well then......your best guess will do. 

Here I am a little bummed about some hair loss and this poor guy has to carry his own whizz around in a target bag.  Woohoo....open my head, bake my brain and medicate me into submission, just please don't make me tote around my piss.  Wow!  He said they were taking it out today and that it was supposed to hurt more coming out than going in.  He wasn't sure how this was going to be possible as he screamed when they put it in.

So.......life is great.  I am feeling fine, and as a brilliant person once told me,  you are who you pretend to be.

jobey

Tee Ball II 'The heat is on'

The second TBall practice has come and gone.  If there is a practice in the universe farther from the first one, I want to see it.  Gone was the running and piling.  Missing was the laughter.  Absent enthusiasm was. (This is Yoda type)

In place of those energy laden lads stood idle totems that glowed an unhealthy red in the afternoon sun.  The only signs of life were the parched beggings, "Water Break?" voiced in the whine that only a four-year practitioner can produce.   Individually this kind of whine can break bones but when voiced in unison, it destroys the mind.

Water breaks abounded of course.  We lied to ourselves that it was to keep those little guys hydrated but deep down we knew it was sanity maintenance.  Then we learned that the cry for water was only a diversion.  Not one of the kids had any desire to be there at all.  We discovered this, as one by one each boy would simply run off the field to his mother or father and quaver," III donnn'ttt ffeelll gggoooodddd. I wwaaannnaaa gooooo hoommme."

Being stupid and knowing that sticktooittiveness (I might be the first to use that one!) is very important, the adults went into motivational overdrive.  It started as the standard list of cliches about practice, working, and staying until the end.  These are the same phrases that when voiced at work induce each of us to fantasies of beating our bosses with a pitchfork.  The predictable failure of this insane approach required us to get out of our lawn chairs and inspire our boys by standing with them in the field.  Our hope was that close proximity would keep the other parents from hearing our whispers, "only fifteen more minutes left, then we can go home." Standing beside them had the added benefit of being able to see their eyes roll back into their heads as they succumbed to heat exhaustion.

I would like to report that some of these tactics were successful but that would be a complete lie.  Instead, every single mother and father on the field went to the final resort-defcon 4- the mouthing of absurd promises.  Here is a sampling of what I heard. 

If you hit the ball three more times we will go for ice cream.    Do you want to get a power ranger for your birthday?  Well we were going to go for tacos but if you can't act like a big boy.....     If you go back out to second base, we can go fishing this weekend!

So what did our boys learn?  That finishing something you start is important?  Practice makes perfect?  Hard work is its own reward?  Or that mom and dad are a couple of sadistic shits that enjoy frying my ass in the sun?  I fear that if the memory of this practice drifts through Aiden's mind while determining the quality of my retirement home, it would be best to start practicing the question,"Would you like that super-sized?" pretty darn soon.

Thanks to everyone who keeps reading. 

A final thought...the remaining prescription of power sedative has been awarded to my loving sister Melissa. 

Lucky Man

Hi everyone.

Today I discovered just how lucky I really am.  I met another patient at the shake and bake office.  He also had to wear a mask but his was horrifying.  It covered his head, neck and shoulders!  I can only imagine the hell that he goes through every day when they snap his ass into his own plastic coffin.

Whew!  I can deal with the eight minutes during which the 2 rads are pumped into me.  I even stopped taking the sedative due to its interesting side effects.  Here is a brief description of a day on this stuff.

8:00am - Take 1mg table of Lorazepam

8:30am - Total indifference to wearing masks, being spanked....anal probe?.....put some good music on and I am yours...

9:00am - Water plants at home....you grew a new flower just for me?

11:30am - Lunch

1:00pm -  Oh mother of all that is freaky I am reaaallllyyy stoned.  I think I will take a walk.

1:30pm - Explain to the nice occifer why I was skipping in middle of street and that if he would only turn off the flashing lights I think I could stand up.

3:00pm - Wake up on couch (my house!) with Happy Days episode on TV. 

5:30pm - Amy arrives home from work and I begin chattering unintelligibly at her.  She nods and smiles.

Note:  I have about twenty of these left and will begin taking bids now.

Love to everyone reading and thanks for the comments and e-mails.

joe

Cycle of Dad

Today is father's day.   As a son, I think that it is wonderful that there is a day when you take the time to tell your father how much you really appreciate all the time and lessons he has shared with you throughout your life.   As a dad, the entire concept still eludes me.  Sure it is nice to get a card, a gift, and get waited on but being thanked for being a dad is just silly.  Its like getting paid to sleep.

Being a father is not breaking rocks on a chain gang.  I admit, at times it requires the patience of stone and can wear you to the very brink of exhaustion, but overall- its a great gig.  Spending time with your child is glorious.   There is nothing that compares to watching them smile, laugh and discover the world.  I do this because I love it.  I need special recognition for this? 

So today I want to thank both my father and my son for showing me my place in the cycle and teaching me that giving and getting are the same side of a strong hug.

joe

Nothing like the smell of Napalm in the morning

Third day of treatment went great aaannnnnnnnddd i aaaammmmmm not espeeereeerinsinnnng aaaaany cite affecttss.  ( Pleasse scuse meee...I coughed and I think i betttter put the pink thingy on my monitor ina ziploccc....i am guussssing it goes back in.)

Back- The combination of the sedative and my continuing ability to relax under the mask are resulting in treatment times under ten minutes.  I am taking my own tunes now and that assists in making the experience more palatable.  For those of you who have never noticed, I can ask a lot of questions.  This is particularly true when 2 RADS of energy are baking the old naked grey.  I know these questions are annoying but they are very necessary.  When you have a tumah and you see and hear things that do not quite fit into the preconceived perception boxes you have spent a life creating, it becomes important to have your senses verified by someone you love who is relatively stable.  Let me give you an example.   You are enjoying a beer on your front porch when a small boy walks down the sidewalk holding a leash.  At the other end of the lease is a goat. 

You turn quickly to anyone on the porch with you and ask," Was that kid walking a goat?"  Answers in the affirmative are great- I am not ready for the boobyhatch.  I mean the world is pretty weird and a bubbles de strange drift by all the time.  Answers like, "What the hell are you talking about?" tend to be less fun.  This means one of two things.  The person I love and trust is fucking with me or, wait for it, all connection with reality may be gone.  Put on the red crash helmet and draw straws for who bathes him this week.

When they turn the radiation on, a bright light on the emitter flashes and I can smell something burning.  The emitter is pretty close to my face and I decide to mention it to the nurses. 

"Oh it is not burning, that is just your nose.  When the energy passes through your nasal passage, it stimulates the nerves and you have the sensation of smelling burning ozone.   Oh, and a lot of people report the sensation of seeing a brilliant blue light."

"A different light than the one that comes on from the emitter?"

"There is no light in there.  That is your optic nerve reacting to the energy passing through your head."

"Huh"

"OH it is very common.  Most people see the light and a fair number get the smell!"

"Well lets get me out of the most people column as quickly as possible."

One lady in blue smiled and the other just shook her head, " You only have 28 sessions left.  Now that is something to think about."

True enough.   

Thanks for reading and love to everyone out there who continues to send kind notes and words.

The first Rads

Radiation Therapy has officially begun.  I handled being bolted to the table only marginally better than I did during simulation. (Anyone interested in a fuller description of this can read the post titled Simulation a few weeks ago.)  The nurses decided that I was too much a pain in the ass and opted for a new tactic.  The decision was probably reached after I screamed, "Get me out of this fucking thing now because I am about to have a panic attack."  I was not bullshitting them.

So they put me in a room with my mask to practice.  The logic being that if I wore it in a room for a while it would make it easier to wear again in another room.  Imagine practicing breaking your own leg and you might begin to appreciate the stupidity of the idea.  When they realized that I had actually chosen to read outdated People magazines instead of putting the mask on my face, they chose a new and much more successful tactic; they medicated me.  Everyone should take Valium.  Ahhhhhh.  Mask?  No problem.  Give me a Prince Albert.  I really don't care. 

The treatment went well and only lasted about ten minutes.  The table you are on spins and the big arm coming out of the wall twists and turns so that you get a dose from the right and left at multiple angles and then finishes with a shot right on the top of the head.  What was a little freaky was the music that someone selected.  I was not aware that I could bring a disc to listen to during the baking so they selected Neil Diamond.  Now I like the way Neil croons about prostitutes and narcotic bouts of depression but there is something distinctly surreal having radiation pumped into your noggin while Neil whines out the lyrics, " I am I cried..I am I said..... to  no one there- not even the chair."

So begins the first of 30 treatments.   I am now armed with a prescription of chill pills that I will take prior to every treatment.  Groovy.  My apt is at 8:30 every morning so it will be nice to get these out of the way and then get on with the day.

On a fun personal note, my dad took me to a TBones ball game tonight and we had a great time.  They lost to the Joliett Jackhammers 6 to 5 but I doubt anyone cared.  It was nice just to sit under the lights and hope for a foul ball.  Thanks Dad.

Thanks to everyone who is still reading and leaving comments. 

joe

Kansas is Sad

Hi folks.

I was fresh out of ideas and was going to skip posting today but then the freakishness of the day unfolded just like a Georgia O'Keeffe and voila, two tidbits to share.

The phone number that we were given when we moved across the state line used to belong to a Cigarettes Are Us.  We know this because people occasionally call and are dreadfully disappointed.  I like to imagine that they were calling to confirm that there were 27 cartons of Pall Mall on hand before going to all of the effort of jump starting the car and heading over.

Today brought a new twist.  The phone rang but I avoided it because call waiting had no information and the number started with 888.  (No I am not interested in your glorious timeshare opportunity.)  The same number called back about five times over the next hour and never left a message.  I finally picked up out of boredom.

"Is Steve there?"

I explained that no Steve was here.  She indicated that she was actually calling Cigs-fo-less and we did the dance about we have their number.  At this point, she asked, "What time will Steve be back?"

"No Steve now.  No Steve ever.  This is not Cigarettes for Less.  It is a home that happens to have the number that used to belong to them."

"Did he leave a number that he could be reached at?"

I had a seizure.  Now I know that one of the triggers is exposure to abject stupidity.  "I didn't move into the store!  There is no mattress behind the glass cases.  I moved into a house and the phone company gave me the number that the shop used to have.  They can do that you know, move phone numbers from one physical location to another.  Technology is just crazy these days."

"Oh....ok.........thanks anyway."

"No problem.  Good luck with the breathing and whole autonomic nervous system thing."

Believing I have had my daily stupid I open the paper.  I am dreadfully wrong.  Thursday evening the three member Kansas State Board of Education formally recommended that teaching standards should include strong criticism of evolution.  Thus was played the opening move in allowing the inclusion of  intelligent design in the curriculum.

One of the stated flaws that evolution does not adequately explain is the existence of DNA.  I am having another seizure......  Connie Morris, one of the board members who made the decision, apparently feels that more needs to be done and would like to see more criticisms included.

"There needs to be more getting the criticism of Darwinian evolution in the standards and in the classroom."

I know.  I typed it verbatim.  I read the damn thing three times.  Apparently the intelligent design applied to Connie's sentence structure was done late on the sixth day when God was really tired.   Maybe Connie called me today looking for Steve.

I was not intelligently designed.  I grew a brain tumor.  I truly hope that this genetic shit-storm was spun out randomly and that it wasn't planned.   After a few seconds of consideration, none of you were intelligently designed.  Some of you were drawn up by the intern. 

Well that turned into a bit of rant.  I just thank God I live in Missouri. 

Love to everyone reading. 

Tee Ball

Hey everyone.  Sleep has arrived!  Woohoo.  I wish I could tell one of you it was delivered by one of your homeopathic remedies but....it came from Pfizer.   It is all good. 

I want to thank everyone who reached out regarding the drop-off in my musical taste earlier this week.  Thanks to everyone who volunteered to burn discs to rescue me from the hell I had sunken into.  I also want to acknowledge a few comments that came back.  Sean-you are correct, Rush shouldn't be grouped in with Styx and Boston, they are way above that class.  Kevin, even in the deepest depths of of my consciousness, Journey is not allowed.  In fact, if I ever slip into a coma, please play Journey songs until I wake up. (Please do not play them on anything of value to you as I will most certainly snatch it out of your hands and dash it on the wall.)  One last note for the deeply troubled- there were no Styx songs form the Mr Roboto era.  Even I have my limits.

Tuesday night was Aiden's first TBall practice and it was glorious.  We arrived to find out that he is on the GRAY team.  This means that they wear gray shirts.  Andrea and Amy and I all showed up so he had lots of support.  Within about five minutes I decide that Matt, the coach, deserves a salary in the six figure range. 

The first lesson involved naming and running the bases.  Each base was pointed out and assigned the proper numeric designation.  When coach thought that this information had been adequately digested, it was time to run the bases.  First base presented no big challenge.  About twenty gray shirts rumbled the correct direction although no one actually touched the base.  Matt herded them back to home plate and then instructed them to run to second base.  This is where the four year old mind took over.  A gaggle of gray shirts took off towards second base but they took the straight route.  The need to go by first base first was either forgotten or their beautiful little minds just decided that seemed a little out of the way.  The collected parents all giggled at the cuteness of it all until we realized that the kids failed to stop at the base and were now at full gallop some twenty yards out into the grass. We needed a water and potty break after this as most of the little guys returned desperately grasping their crotches in a vain effort to stem the tide. 

Now it was time for the real fun-hitting and fielding.  First batter steps to the plate and the rest of the team runs to random positions in the field to await the coming grounders and pop flies.   The batter whiffs on the first couple swings to the delight of all because the kids in the field are still valiantly attempting to put their new gloves on.  Painstaking attention is being given to insure that each tiny finger goes into the correct hole.  Complicating things is the disparity between the size of their hands and the leather monstrosities they hold.  When they are finally successful, they look at mom or dad and hold the glove up in the air requesting approval.  The boys look as if they are holding VW Bugs over their heads.  About half have the gloves on the correct hand.

Not to worry as coach is giving some pointers to the batter.  The little guy nods and steps up to the T with grim determination.  The swing is reminiscent of Mighty Casey.  The bat whiffs violently over the top of the ball and into the stomach of coach who is looking at a field full of kids looking at their parents.  The noise that leaves coach startles the batter who is suddenly terrified he has done something wrong.  Coach reassures him that he is OK and indicates he should take another swing.  This is all done with gestures as coach is not really breathing.

Finally the ball is struck and becomes a simple grounder up the middle.  One little guy gets in front of it and knocks it down so it is lying on the grass beneath him.  The boy nearest him runs to get the ball and in his exuberance performs one of the most perfectly executed tackles I have ever seen.  You can see the excitement building in the eyes of his teammates as they rush to try the same maneuver.  Before it is all over there is a heap of about fifteen four year olds battling each other for the ball.  Now that would get me to more pro ball games. Every ball hit into the field resulted in this violent melee.  None of the parents stopped it; it was just too damn fun.  I am sure that the coach would have stopped it but he was intensely focused on recurring inhalation.

Then it was over and all the players got a juice box and were happy.  So was I.

Anniversary

Hey everyone.

It was a beautiful morning outside.  The sky was powder blue and pushed a light breeze.  I would guess it was mid 70s.  I pulled on shorts and a T, brewed a monstrous cup of green tea and headed for the porch where I sat with my feet up and the newspaper.          aaaahhhhhhhh     I apologize to everyone who was sitting at a desk but I don't advise running out and getting a tumah so you can drink tea.

Somewhere in the middle of a story on the Royals, it occurred to me that it was June 6th.  Two years ago today I woke up sitting on the toilet seat in the bathroom surrounded by paramedics.  Several hours later a man in a white coat was the first to use the word tumah.  Wow!  Two years.  It is amazing to me.

In an event of pure synchronicity, I had the opportunity to spend some time yesterday with a friend who has walked a road that is not far from my own.  It was a blessing for me.  Her smile, laugh and warmth were revitalizing and healing.  I feel my strength increased just from being near her.   Thank you V.

UPDATE- I slept last night!  Oh yeah.  I regret that I was not able to use any of the remedies that many of you sent in as I did not see them until this morning.  Thanks to all of you for taking the time to put them in a comment or e-mail them.  If I start having trouble again, I will begin trying.   Would the individual who sent the potion recipe please tell me where I can procure Tincture of Spiderdick? 

On a sad personal note.......  I listen to tunes while I type these things to life.  I needed something new this morning so I began searching for some new MP3s.  The unholy birth of this effort is composed entirely of songs from the bands Rush, Boston and Styx.   After listening to it for a bit I determined two things:  Styx was a really bad band and the only suitable name for this collection of crap from the past was Skate Rink.

That is all for today.  Please keep the comments coming.  Thanks to everyone who is reading and making my world a better place.

Red Eye

Hi everyone.

I need some advice.  I am not sleeping very well right now.   This is bad as I have always been a very good sleeper and I am not adjusting very well.  Amy is not having the best time either as I end up waking her up all evening.  We believe the cause is a side-effect of the steroid that I am taking.  It winds me up pretty tight. 

As you might guess, I am really ready for this to pass, so I am hoping that one of you has an idea.  Here are some of the things that I have tried unsuccessfully.

Warm Milk

Melatonin

Monistat cream

Cordouroy Sheets

Baby Elephant Pamprin (Papmprin is fed to baby elephants.  The elephants cannot digest the pills so they eventually pass, where they are collected and bottled.(A kind of mamalian kimchi)

Yes, I am that desperate.  Please send your ideas before I lose it completely and become one of the scary people in line at the store.   ( NO I don't have a target card but I am perfectly willing to fill out an application right now to save 10% on this bottle of shaving cream and this bag of twizzlers)

Thanks again for all of the comments and love to everyone who is reading.

joe