Way2Neurotic

file this under..."stuff i need to say..."

2010-06-20T19:36:00.000-07:00

Sweet Mariah

Squirming baby, newly born,
Tiny breathe, sweet and warm.

Rosebud lips and cheeks so pink,
Momma barely sleeps a wink.

At Mother’s breast, a happy sigh,
Falls asleep with a lullaby.

Today a bottle, tomorrow a spoon
From cradle to walking, much too soon.

Soft dark hair with a tiny curl,
Gonna grow up a Daddy’s girl.

So hush little babe, a don’t you weep,
Angels shall watch over you while you sleep.

By Patty Bickle

Mariah Patricia Bickle - 9-11-96

finality...

2010-06-18T19:48:00.000-07:00

i am home again...three days in the hospital this time.

the tumor in my head sometimes causes me to have difficulty swallowing food or drink.

of late, i believe occurrences of difficulty swallowing have triggered some sort of respiratory event, like constriction of bronchi or something.

last trip the ER doc offered to keep me or let me go home again...

as i seem to keep returning, i asked to stay in hopes of finding the cause..and maybe keep my ass alive a little while longer.

so they let me loiter around in one of their beds and later decided that they see some pneumonia in one of my lungs...

if they had looked close enough the first time i was there the risks following could have been avoided...

anyhow....

unfortunately, the last two weeks have left me exhausted..physically and emotionally.

i have to dig deeply to find strength to continue this . . . .

i don't know how to say goodbye.

another ...

2010-06-14T10:49:00.000-07:00

another respiratory episode left me unconscious twice yesterday, waking (barely) just enuf to call the neighbor to help me just a bit. she elected to contact medics, and in short order my apartment was once again full of uniformed city personnel.

i hate getting carried outta here all the time...
at least it wasn't in a bag, although it was close this time...

dunno for sure how long i was out, but i have an hour or so of lost time so i 'spose that's a clue.

docs can't seem to find the cause of my breathing difficulties, so i am on my own figure this mess out before the chapter ends early.

i was feeling good. i had been up, made a batch of ice cream in my new ice cream maker, peeled and cut up a couple of sweet potatoes for sweet potato fries...very yummy btw.

i remember choking just a little on a beverage, then fade to black.
i woke for a bit, very hot and drenched in perspiration...
i tried to pee, but passed out again sitting in that room...
i woke slumped against the wall next to me...again, screaming hot and sweating like crazy...
finally making it to the front room again, calling the neighbor for assistance...

one of these days my ass isn't gunna wake up....

all right.. that's enough.

2010-06-10T21:28:00.000-07:00

all right, that's enough of this business......

a friend had planned to come over to help me with some odds and ends the last two days,
but a yukky sinus infection has sidelined her for a bit.

so when another friend called and offered to take me to lunch, i happily accepted.
he and i go to lunch from time to time, and it is therapeutic for us both.

it gets me out of the house, and we chat about life, and an assortment of other things...
he has suffered a significant back injury at work and faces chronic pain and debilitation from the injury so we have much in common.

however, today while sharing lunch, i started having some problems breathing...
very shortly i approached a level short of conscious and my friend elected to call the medics and they carted my happy ass off to the local hospital...again.

a couple breathing treatments, a few chest x-rays, an ekg thing, and a butt load of blood work, including a arterial blood gas, (ABG), which is usually very painful, but this lady was OFF THE HOOK.
i barely felt the deep vein injection... for which i was grateful, as these guys had already stuck me two or three times, including once in the ambulance.. i told that paramedic there was no was he would find his vein, but he HAD TO TRY!
she finished quickly and was sure to admonish to me... "Did you expect anything else?" . . . "I did about a hundred of these on your Mom.."
another small world moment.
it's been in excess of twelve years since her passing, and she remains in the hearts and minds of those she touched.
a few more hours of oxygen and observation and a phone chat with another of my docs and the local guy cut me loose.
the friend kind enough to feed my wretched soul was also kind enough to come fetch my bony butt from the hospital, although his wife drove...(i'm afraid that spoke to the impact to his frail back my day has brought to him)
he saw me to the door, and ensured i parked myself where i should
no making this worse now ~!
i resisted the urge to get up for drink or anything else for that matter....
i did what i was told and soon fell into slumber, despite napping well at the hospital
i was woken by another friend calling to make sure i was still above ground
and here i sit.
although respiration is still shallow, i am lucid for the moment and i'll take that
i''ll kick on the the oxygen concentrator and hope that i don't repeat this business anytime soon.

i did end the evening with a chat on the phone with my little one...
(although she's just not so little anymore)
she's an elusive bug... not always easy to get pinned down long enough talk to
that makes today a good day.

bleak ?

2010-06-08T16:47:00.000-07:00

my oldest is out of our home with a new boyfriend 11 yrs her senior
me ex has taken my youngest to nevada for at least the summer…probably more
at this time, i am powerless to affect any of this

court dates looming on the horizon forebode a long feared outcome…

despite my docs brightest outlook, my symptoms continue to degrade..
double vision is back more often than not,
eating the simplest of foods, meds, even liquid are difficult at best to swallow
using the bathroom is problematic everyday…
somewhat suprisingly, breathing has become enough of a problem of late to warrant a trip to ER.

this is the slow degradation that i have long feared

i grow more and more tired…

this is becoming too much..

Symptoms worsen...

2010-06-05T03:01:00.000-07:00

again, i wake in the early early hours of the morning

again, i wake, my shirt sodden with sweat

again, i find myself reaching for conscious

i am hot, struggling to breathe, searching for my phone

my friend doesn’t answer.
another call, to another friend, also goes unanswered. geez.

today is worse. i am clearly in worse shape than before.
there is indication of loss of - conscious.
freekin’ MRI sez i am better, but new symptoms dispute that diagnosis.

i manage to get my bony white ass into my electric scooter and drive over to my breathing treatment machine
i get the meds in the nebulizer bowl and turn it on…in hopes of better breathing - i sit and rest, breathing in the cool mist
when the mist stops, my struggle for air continues, seemingly unaffected by the drug laced vapor.

this is not good. i should be better.
the hospital i know, doesn’t have a lot more than i have at home.

my phone rings… the first person i called is calling me back. we talk, sort of.. my voice is very weak…soft, hard to hear over the phone. he understands well enough to come here, and we ultimately go to the local hospital. once there, i am thankful that for once there is no one else being treated

another breathing treatment with a higher dose of meds and some oxygen seems to open things up and again i can breathe unhindered
the doc orders a different steroid to be taken for a few days and recommends i follow up with my regular doc.

i fear that this event is an indication of the slow degradation that i have been afraid of for so long.
not much else could be a worse development in my condition

now this morning the sun is out and i think i’ll motor out and get some sun.
forget for just a bit that i am so sick...

i wish i could drive.. take the car to a local river park… burn a few burgers and dogs…

ahh well.

thursday...

2010-06-04T20:30:00.000-07:00

i woke this morning around 1:00a.m.
struggling to breathe…my shirt drenched in sweat…
i struggle to sit up…i reach for my blood pressure cuff…to see how bad i am.
do i need to go?
i resist calling an ambulance…they are so freekin’ expensive!

finally it reports…87/56...pulse at 101…these numbers aren’t good.
the person i call to take me to ER doesn’t answer…damnit.

i try to think back…did i take my morphine the right way?
i wonder - - did i wake half way and take a second dose by mistake and overdose myself? damnit~!

i need to sit up – to get up…push myself to a conscious state.

this is what i have feared the most… i’m alone, struggling to breathe.
yeah, i’m joe tough guy if i can meet death on my own terms. quick and easy..
i can walk in front of a bus with no problem. lights on, lights out. done.
not waking up is just fine.
this fucking around BS ain’t cool.
does that make me a coward?
i hope not.

i drift off to sleep again…
sometime later i will awake again…still feeling hot, sweating like crazy, breathing still labored and shallow.
as before, i find it difficult to move
i need to pee…i finally find the strength and clarity to stagger off to the water closet and take care of that.
later my nose will cause me to question if i actually made it in time.{did i pee myself just a little? eeww ~!}
i return and sit awake for a bit...test my blood pressure again…
my head hurts like hell but i feel good enough to refrain from another emergency room trip
i let myself drift off to sleep again, well knowing i could have just as easily not awoke
one of these times my ticker is going to slow down just a little to much

porridge for me...

2010-05-26T11:09:00.000-07:00

well, one of he last remaining molars in my head just busted.

every one of the root canals performed by a certain dentist in stockton has failed.

crap.

freekin roller coaster....

2010-05-25T08:06:00.000-07:00

My friend and fellow-combatant is not feeling well....

her blog of late worries me, and i hope that her discomfort in recent days are simply bumps in the road that will smooth-out soonly...

If you have a moment, drop Jessica a note and wish her well?

(clicking on her name above should take you there...)

thank you..

blast from the past.

2010-05-24T16:55:00.000-07:00

this morning was scheduled for Avastin treatment.

for those of you new readers, those unfamiliar with cancer treatment or unfamiliar with my treatment, this is the twice monthly injected "chemo" treatment i am undergoing to slow/stop the growth of the brain stem tumor in my that is trying its hardest to kill me.

the treatment kicks my ass and makes me tired and sore and a host of other highly inconvenient side effects. anyway....

upon arriving, i successfully registered with the girls in the basement and elevator-ed up to the second floor where treatment occurs.

they took blood pressure and temp and weight etc and i proceeded to the room wherein several people sit and funky chairs and receive drugs intravenously...
its a small group of people that see each other because they have similar treatment schedules... all have one sort of life threatening cancer and are in various stages of treatment...

today, to my sad astonishment, i saw a very familiar face. this elegant woman from my distant distant past struck a nerve the moment i saw her.
boys of any age would likely remember the women in his life in the same role...

this woman was my 2nd grade teacher in grade school. Mrs McCain. although my crippled brain had some difficulty recalling her name for a moment, i clearly remember her class.
maybe i am a freak, but i can recall the names of every one of my grade school teachers and most of my high school teachers.

anyway, she only needs visit for treatment every three months now so it will be awhile before i see her again, but she remembered my brother and me well and we had a wonderful chat as we both received life saving treatment.
she retired two years ago as a result of her cancer but she looks and sounds very good.

when we still lived at our old address, my kids attended the same elementary school as my brother and i did so many years ago. my youngest even had the same teacher for third grade that i did for third grade so long ago. wow huh?

once again, its a small small world. we are all... connected. 7-layers?

anyway.. luck to all...

i think i am really sik...

2010-05-20T22:45:00.000-07:00

having grown up with my dad being a cop, i caught hell nearly every day at school for shit he did on the street... he was always arresting someone's mother or brother or some damn thing.
i had to go the extra mile to prove to them that i was just like everyone else.
what a drag.

but, i also did things that no other kids did.

being a cop in a relatively small town, i guess there wasnt a lot of choices of friends he could really hang with, consequently, we did lotsa stuff with other cops.

i clearly remember fishing trips in what i think was a narcotics van, with very interesting people.
some of these "interesting" people were on the Bomb Squad.

i learned some very funny, albeit very twisted pranks from these guys.
maybe that explains the following.

i've been receiving a sales calls and political calls on my home phone.
many are recordings with no option to "opt out".
all my phones are on the "Do Not Call" list so these sluts shouldn't be bothering me anyway.

todays call was pushing credit repair for credit cards and i was bothered that these pukes were wasting my time and tying up the line designed for my Life Alert System.

so i waited for the loong sales speech and everything and the thing asked me to leave my name and phone number and debt value yadda yadda...

immediately after the beep, i mustered my feeblest of feeble voices, complete with panting breath, gurgling sobs and panicked, hushed tones...
"Please p-p-p-please...(pant - - pant) help me.. they- - they -- they won't let us leave.. we can't get out.. (pant - pant... weak cough... sniffle... ) please hurry they're coming back.. pleease..."

then i dropped my handset on the desk and chased it around a little and then hung up.

just so you know...

2010-05-17T15:08:00.000-07:00

just a quick note..

for the last several weeks i have been experiencing very noticable difficulties remembering stuff.

new stuff, older stuff, peoples names, whatever.

if i ask a seemingly dumb or repetitive question, its likely because my brain dumped the data somewhere along the way and i just dont remember things the way the rest of the world does.

it drives my kids nutz and it isnt any fun for me either.
i hate it.

i try to keep more notes, on the most mundane things sometimes, and then i forget where i put the notes.

so dont be offended if i forget something we talked about, or that we talked at all.

i dont know if this will pass or if it indicates progression of this disease.

until next time ~ ~ Happy Birthday~!

(remember? Frosty the snowman used to say that each time he melted and was rebuilt - everything was brand new again)

how come i can remember THAT?

2010-05-11T20:36:00.000-07:00

That's it, I've had it.

I have found my breaking point and been pushed beyond.
I don't need anymore more bullshit from all your fuckers.

Less my youngest daughter, my awesome brother and his most awesome family, and a handful of great great friends...everyone else can piss off.

See Ya'.

If anything can go wrong...

2010-05-04T01:47:00.000-07:00

It's nearly 2 a.m. ...

I can't sleep...AGAIN~!

One difference this time though, my youngest daughter, Mariah is awake with me.

She has developed an awful cough and is running a low grade temp. Dry and coarse, it seems to return from time to time just to make things difficult for her and me.
We've tried a few non-prescription things tonite... including throat spray-which she hates with a passion and the remnants of a prescription cough syrup in the cupboard.

She continues barking - unable the stop this nagging monster. Its awful to hear her continue when I can't do anything to help her tonite.
I don't know what else to do.. especially this late.

Tomorrow she is scheduled to go with her class to San Francisco for their graduation celebration.
We are insomniacs here, creatures of the night. She has a hard time sleeping at night so she was so careful to get to bed early.
Now this cough has had her up for the last hour. She is worried that she will have trouble in the morning on so little sleep.

Crap.

Well, now that I got THAT off my chest I'm going back to try and sleep....

Night.

conflicting info...

2010-04-28T11:14:00.000-07:00

soooo...

i just got the report from my latest MRI...
it sez that my tumor is "stable"... it means that the thing hasn't grown since the last MRI.

it means that the current regimen seems to be working.

(although when comparing to older MRI's, it is nearly TWICE the size it was in earlier pictures.)

the doc in charge of my current treatment has been, and continues to say...that the current meds are all that are really available for my tumor.

upon emailing the report from this MRI to my previous brain doc at UCSF, her reply was that she agreed with the current plan, but in the event this regimen ceased to control growth.. there were "a number of other drugs to try".. not discounting the possiblity of another round of radiation...which was previously decribed to me as a one time deal.. based on the total measure of radiation recieved...

sooooo... my treatment options went from zero to several choices/combinations.

crap.

don't get me wrong.. its good news.. just confusing.

like an old wooden roller coaster... up and down and bumpy the whole way through.
(sigh)

Just So You Know blog

2010-04-24T21:33:00.000-07:00

access to the internet is often the only contact i have with the outside world.
i surf and blog, email, and SMS friends to feel somewhat normal.

sometimes my attempts to blog about something on my mind simply don't come out on paper the way they sound in my head...
i stumble and struggle to find the right words.
sometimes i wind up way to wordy in an effort to be precise

the same technological evolution that many claim has disconnected us…
reduced us from the personal contact of hand written letters and phone calls to seemingly cold emails and texts, really allows me to reach far more people than i would be able to reach any other way.

the freedom of sending a (still personal) note that can be retrieved by the recipient at their convenience works very well for me. i can no longer write very legibly as my hands don’t respond as i ask them to, and often i am awake at hours of the day that don’t work well for “normal” folks.

the internet also allows for finding and contacting people that i would have great difficulty finding thru other means.
i have several new friends that I have met online due to out shared medical problems
it is both comforting to hear from them and therapeutic to share with them my experiences.
often they are the only ones that truly understand what is happening to me.

the ‘net also helps me keep in contact with old friends.
some have disappeared on me…some have come thru in spades.
so you don’t know what to say. big deal.
avoiding or ignoring me is far more cruel than saying something awkward

a friend who is battling chronic health problems as i am sent this to me and i am sharing it here. i find it to be well written. it communicates well emotions that i and many friends experiencing chronic or terminal conditions experience.

below is the email sent to me,
it is as i received it.

please read. it is very good.
it is accurate. this author hit it right on the head.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Subject: just so you know....
This was posted from another group I belong to and I would like to share this.

In the spirit of informing those who wish to understand:

These are the things that I'd like you to understand about me.
There is no cure for my situation, even with all of the technology our society has.
They cannot fix me.
It is not because my doctors are cruel or misdiagnosing me.
I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still ME...stuck inside this body.
I still worry about my family, my friends, and I'd still like to hear you talk about yours too.

Please understand the difference between "HAPPY" and "HEALTHY."
When you've got the flu, you probably feel miserable with it, but I’ve been in pain for years.
I can't be miserable all of the time.
In fact, I work hard at not being miserable. So, if you're talking to me and I sound Happy, it means I'm feeling happy in that moment.
It doesn't mean that I am not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. I am merely COPING.
I am sounding HAPPY and trying to be NORMAL.

Please understand that being able to stand for ten minutes doesn’t necessarily mean I can stand for twenty minutes or an hour.
Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today.
With CHRONIC PAIN it gets more confusing everyday.
It can be like a yo-yo.

I never know from day to day, how I am going to feel when I wake up.
In most cases, I never know minute to minute. That is one of the hardest and most frustrating components of CHRONIC PAIN… The same applies to sitting, walking, thinking, concentrating, and “BEING SOCIAL.” Chronic Pain is variable.
It's quite possible that I can drive to the store and do a little shopping one day, while the next day I'll have way too much trouble even getting out of bed.

I may need to cancel a commitment at the last minute. If that happens, please understand that "Getting out and doing things" does not make me feel better, and can often make me worse. You don't know what I go through and how I suffer in my "Private Time."

I am working with my doctors and I am doing what I am supposed to do. Sometimes participating in a single activity for a short or long period of time can cause more physical pain than you can imagine. Not to mention the time it takes to RECOVER and the recovery can sometimes be intense.

what does it all mean?

2010-04-24T17:03:00.000-07:00

maybe i shoulda waited.

last weeks' mri report sez my tumor is stable compared to the last mri (in dec).
however, the fking primates attempting the previous mri produced reportedly completely unusable images, so i fail to understand how any comparison involving said images is relavent to anything. so, i went back to the report on an mri performed at the same facility in oct '09.

the technicians' measurements indicate that my tumor was indeed slightly smaller when compared to october '09 measurements.
but i would like a wider...deeper perspective of my progress, or lack of. so i go get the report from the mri performed in july of '09. again, at the same facility. (yes i know... i really dislike these guys sometimes but i dont have alot of choices)

when compared to july images thing is nearly twice the size it was.
chemo was started after new growth was found following radiation treatment.

i dont believe we will ever get this thing reduced to the size it was after radiation.
the question is, can we stop it where it is with the chemo?

crap..

maybe i shoulda just waited for the doc to tell me what it all means

now, i'm just weighting.

mental health day. . .

2010-04-21T16:14:00.000-07:00

the subtle return of just a few symptoms has that nagging voice blowing gentle whispers of suspicion in my ears again...

some flank pain, blurry vision, difficulty swallowing food have all reappeared in recent weeks.

again, i am unable to determine their specific cause...
again, uncertainty wields a sharper blade than cold hard fact.

today, a new MRI was taken at a local building calling itself a hospital.

the last MRI taken in December of '09 was worthless due to what the technician described as "blurry images", implying that the patient, (me) moved during the process, resulting in images of such low quality that they were basically unusable.

what seems to have failed to make it to their report was that this pack of troglodytes were unsuccessful in administering the i.v. needed to inject dye media essential to the process.
they also failed to convey that the primate shoving the needle in my arm on the 6th attempt, blew my vein out right in the middle of the media push, resulting in insufficient contrast media to get the pics they wanted.

"the patient moved" - my ass.

if he did it was because the incompetent circus these people pawn off as professionals strapped him to an MRI table for a barbaric 45 minutes beyond what the process requires.

SOOO... in a vain attempt (vain...that's funny huh~!) to avoid repeating this fiasco, i called the radiology department early this morning and advised them of the condition of my veins and previous difficulties with this process. i asked that an i.v. be established prior to beginning any picture taking.

the voice at the other end remembered having performed MRI's with me in the past and assured me that he would do everything in his abilities to not repeat the aforementioned difficulties.

the best laid plans of mice and men.

i arrived easily by 12:30 for registration as requested by the clatch running this show.

one particularly defective hen waddled over to the window and informed me that i was on her list as having an appointment YESTERDAY.
i calmly advised her that indeed "I" had the correct day and that this was evidenced earlier in the day by confirmation with the person actually scheduled to DO THE MRI ~!!
she obliged everyone involved by calling the responsible party to confirm the facts of the matter.

she would later also struggle with the spelling of my name, the names of my doctors, my insurance information, and seemingly defiant office equipment.

as to the information involved, i have had multiple MRI's performed at this facility for the same doctor, the same affliction, with no changes in insurance coverage for over two years.
a process that usually takes all of 15 minutes dragged on for 45.
the freekin radiology department even called to see if i was still in the building.
trained monkeys have accomplished more.

these difficulties should have been an omen to me. i should have heeded the warning and simply went home and back to bed.

i did not.

today’s technician was both professional and personable. he was confident that he would be able to establish the needed needle access to my bloodstream.

despite his assurances, poor Eddie from radiology was unsuccesful in establishing an i.v. for me today.
two more technicians were also unsuccesful.

"Ian" from another department was ultimately succesful, but only on his second attempt.
in all, seven piercings were required before these goons completed their task.
all smack dab in the middle of taking MRI pics…

now i get to wait until tomorrow to get the results of todays pictures.
results that will be used to predict my future...predict my mortality.
results used to make treatment decisions.

results to make treatment decisions? yes.
but not in the context of deciding which drugs to use.
rather deciding whether to continue or not continue drug treatment.

my doc sez there no other options.
no other drugs are available for my specific type of tumor.
we are doing all that we can do.

again, doubt and doom swirl about in my psyche.
i fear a slow and difficult process.
i greatly fear not having the ability to stop this merry go ‘round of my own accord. (although I think tilt ‘o whirl is a more accurate metaphor)

i have surpassed my own expectations by a good measure.
but surely the bill will come due.

this is what wakes me up a night.
when i sleep.

tomorrow results from this MRI will dictate what decisions must be made.
tomorrow celebratory foods will adorn our table.

we won’t be lauding victories or revering defeats.
we won’t be recognizing the accomplishments of others, be they singular or plural.
no calendar displays THIS special day.

this day, WE are here. Together.
despite what heaven and earth, man and beast have thrown at this motley crew, we are still here.
Together.
this day we will eat, drink and be silly.
this time will be time to laugh.
laugh at you. laugh at ourselves. just laugh.

when is your laughing day?

2010-04-20T13:10:00.000-07:00

update...

2010-04-15T19:00:00.000-07:00

No real blog content here....

Nothing exciting or dramatic enough for me blog about...
I'm not going to blog about current political issues or headline happenings.
Just some cliffy home drudgery here...

I'll tell ya the chemo seems to be working, I can see, I can walk, and I can poop.
These are all things that make for a better day. Not having the ability to do these things make a persons day challenging..difficult.

My oldest continues her classes at the local JC and seems to be doing well, however she doesn't share with me as I would like her to. I'm not really looking for "Leave It to Beaver" wholesome family chats over a full dinner at the table and all, but it would be nice if we communicated better.

The younger girl has signed up for her 8th grade softball team, which surprises me and pleases me to no end. I love girls softball and love watching them play... Forget boys locker rooms reputations for bullying or meanness, softball girls plain scare me. They are tough. When Miranda was playing for a team in the All City League she was catching... her and the pitcher touched the ball every single play. She would dog those players without mercy. God help the poor runner trying to sneak in home. She'd catch that pitch and dare the runner on third to come on in. No words.. no talking. All body language. "Come on in, I'll get your A$$ ~!!" was heard loud and clear.

Mariah doesn't play the same way her sister did, which is good. I want her to be her own.
When she was much younger, (6-7?) I coached one of All City's first all girl softball T-ball teams.
I promise that was one of the greatest experiences of my life. That group of young ladies taught me far more than I could have ever taught them. I would jump at the opportunity to do that again and again.

Graduation looms on the horizon and I am grateful for having acquired a dress and shoes to go with it. That takes alot of stress offa my shoulders. Now hair appt, mani-pedi need scheduled, photos taken. I pulled off Mirandas graduation and didn't know what the hell I was doing. The stuff I didn't know how to do I called female friends for help with. I now have her to help with her sisters graduation for which I am grateful.
I am sure all the requisite teary eyes and some crying will occur...she's the "baby" and she's growing to damn fast. ahh well.....

I've been well enough lately that I was able to attend my Brothers stand-up performance at Hero's in Modesto last night. It was nice to get out..its helps muchly with the mental health problems associated with being stuck in this apartment so much.

We get occasional word from their Marine brother in Afghanistan...Talk of the war or that place causes them some stress, but all is well. The same techno-evolution that I decribe to them comparing no-remote-control t.v. with four channels that went off the air at 2:00 a.m. and pay phones to 200 channels of 24/7 satellite fed cable t.v. and internet capable cell phones allows him to call, email or IM letting loved one sknow he is alive. They are still nervous.

Well, I am off to rest...readying for tomorrows expected travels. A doc appt. maybe a haircut.
I'll look for a few more things to do while I'm out. I was out for a bit today and the sun felt good on my face.

i think ima junkie...

2010-04-02T19:21:00.001-07:00

The bug in my brain makes me take a buncha dope to keep from running off into the sunset screaming and pulling my hair out.

The med of choice today is 75mlg's or so (a day) of morphine sulfate CR.
I think the "CR" is for "continuous release" or the equivalent.
It takes a little more time to metabolize than other "flavors" but has a half-life of about 12 hrs so I like it as a pain management tool.

Anyhow, if I lag on a dose or such the saturation level in my bloodstream gets low and I get all torn up. I feel tired and sore and yukky.

My tummy hurts and pain in general begins creeping back into every nook and cranny it can find. I feel flu-like and as if there were an entire little white box worth of baad chinese take-out in my belly. It gets hot and then cold and then hot again.

Then, I pop a coupla little bluish pills and inna few minutes ~ presto ~ I'm all better.

Magic. Right?

Sounds like a junkie to me.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Actually, there is a difference between addiction and dependence. One is in the brain and one isn't. I dunno. Semantics maybe?

Either way, I'm o.k. with it, and that's all I hafta to sleep with.

hello again...

2010-03-29T12:53:00.000-07:00

Just blogging real quick to tell everyone all is well.

I just came home from Avastin treatment this morning, the second Avastin treatment since my brief stay at the local hospital for a bout with (of-?) cellulitis. (think boxing)

The POS pharmacy connected to the treatment clinic dropped the ball completely AGAIN and made me late AGAIN for a wound care appt scheduled for directly after the chemo appt.

Sufficiently late to require rescheduling for a different day. What a bunch of losers. Critical you say? Maybe so, but this is the second time and these morons are supposed to be professionals.

Anyway...Doc Onc (onc-ologist) sez a-o.k. for resuming Temodar.. leg looks good, blood work looks good, YOU look good... so there.
All systems go. A good thing right? Should mean keepin' me alive a little while longer right?
I hope so.

Today's Avastin hit me early. Made me feel tired already... woozy even while still in the chair gettin' juiced, so i ain't looking forward to next week's Temodar gauntlet.

Today i met a woman with a fairly new cancer diagnosis. Today was her first chemo treatment and she is scheduled to start radiation too... Ick. Radiation alone kiked my ass and doing i.v. chemo and full dose radiation at the same time will undoubtedly be gruesome. I refrained from telling her so. I reassured her that although she faced a horrific diagnosis, and that treatment would be at times unpleasant, that she would be o.k. That like me, she was being allowed a little more time with kids, (she has three) and that was a blessing. Her daughter, also driving her to and from doc appoints, treatments etc, is the same age as Miranda, within a few months.

When I left she was continuing her injection, and would be doing so for several more hours. Afterwards she was hoping to catch the bus to her radiation treatment.
Braver than I. Braver than I.

Anyhow... I think i'm gonna be more tired than usual from treatment in coming weeks, but other than that I'm good...
Soo, if I'm AWOL from blog for a bit, or otherwise slow to respond, I'm likely snoozin' someplace sleepin' it off.

Hope all is well for everyone....
For now, I'm Hangin' in there~!

Cliff

Who are you -?

2010-03-27T08:13:00.000-07:00

Sorry for the mysterious title...it kind of eludes to having a juicy, prophetic, deep subject in this blog....Well, it ain't. Just corny.
Well, maybe not so corny.... maybe a little deeper as you wade thru the thing... ? ?
Luck to you.

OWEY!! ~~ OWEY!! ~~ OWEY!! ~~ OWEY!! ~~ OW!!

ouch even~!

Daaaaaaammmmnn ~! who the hell beat me up while i was sleeping?!?!

I awoke this morning with every single bone in my body screaming for relief.
All Muscles in chorus...

Every square inch of skin singing back-up.

The last time i felt like this i had nurses at my disposal.

. . .

Did anyone get the number of that TRUCK!!?

One thing is sure...

I AM ALIVE !!!

So what if will get started a little slower today.

So what if i grit my teeth a little getting up from the normal little parking place for my butt in the front room.

So what if i will ask for a little more help from those around me today.

I'm a sore 'cuz i've been active the last few days.

I've been active the last few days because i have been physically able to be.

I've been walking around the place, went outdoors and got some fresh air. That bright thing in the sky shone its light upon my skin.

I think this all means:
I AM ALIVE !!!

I'll happily accept that today, take my more-than-half-full-glass and be on my way TY.

Won't you come with me? after all....
WE ARE ALIVE !!!

Cliff Bickle
cliff_bickle@yahoo.com
---> Saturday, March 27, 2010. <----

ticker tocker...

2010-03-20T21:51:00.000-07:00

crap...

a short stall in chemo scares me...
i am back on schedule... sorta.

i am able to walk again, the PT nurse coming to my home is happy as hell with my performance
i am too...

she leaves me tired and sore and sweaty...
(i love saying that :) )

my hands are working well although they continue to degrade from the pinky finger inward

the infection in my leg is all but gone, and
i believe my oncologist will give me the green light to resume the oral meds part of my treatment

double vision has returned and my damned blood pressure has been like 150/100 for daaays,
peaking at 183/101 this afternoon..oncologist doesn't even blink at that but it makes me uneasy
my chest hurts, my head hurts and there is alotta pressure behind my eyes.. that CAN'T be good. i gotta be careful i dont blow a gasket or something.

soo.. what does the return of double vision mean against the continued improvement of the other symptoms? i don't know.

i believe the tumor has already reached a point that any new growth will be realized in short order. as in the theater, the lights will dim and the curtain will draw.

an old acquaintance has returned, and she brings new perspective to life...
i am wary...

but i think i am finding parts of me that were broken and lost a very, very long time ago.
its kinda scary.

the music playlist here has brought me great joy.
i keep remembering and finding old school music from "back in the day", that plagued my parents home when i was so young.

I am playing it as loud as current equipment will allow and it bugs my kids somthin' fierce.
I love it.

hey fooker...

2010-03-19T17:59:00.000-07:00

"hey fooker"

a common greeting i consider affectionate from probly the best brother ever...

it generally begins a conversation in chat as we live fars away and dont often get to talk...
chat lets us talk to each other and allows for the delays as he is usually working and i sometimes just need time to get myself together...

most of our communication is electronic of one sort or another...

i have also found a few new friends here on the innernet and i find comfort and solace in that... in the exchange of ideas and experiences with those people...
some peeple will contest that the electronic age has seperated and disconnected us as a people socially. maybe they have a point, but then again, maybe they are just stoopid.

i dont like myspace much, and the presence of my music playlist here comes dangerously close to resembling such a place. fukkit. i lost a ton of music in recent years to moving and pilfering ex gf's. some of it have found here, in addition to some new stuff by familiar artists.

most of what i initially put on my list has a deeper meaning, as i have sed before, those close to me will know.

some newer stuff has meaning closer to my life now. some is just fun.
independant of my medical condition, life is too short to worry about offending oversensitive people with (whatever).
so here are some fun ones placed close to the top of the list for a couple readers on my mind today. if they bug you, turn your speakers off. but maybe, just maybe, you could let loose, leave the tight chonies at home and let go. play it loud. play it often.
you wont go to hell i promise.

hear what melissa has to say. "shes going to hell, shes a lesbian!" you say. well, i aint sleeepin with her, im listening to her music and so should you. there is something to be learned by everyone there. yes i sed "everyone"
it wasnt long ago when words like nigger and fag were common place. spoken freely in public and in pews. the lesson is, at least in part, not tolerance, but acceptance.

tolerance..tolerate.. what a shitty word anyway. we'll tolerate you, your lifestyle. whata slap huh? how about acceptance? tolerate. tolerate means judgement. acceptance does not.
you aint gotta like it. you aint gotta preach it. but you have no right to tell me i cant.
hitler did that or have you forgotten?
yes this couhtry was built on judeau christians beliefs but it was also built on freedom.
freedom to live and breathe and believe as we desired.
if you aint hurtin anyone government, cops and neighbors should stay home.

you dont like my music? thats ok too. i dont ask you to not play yours.

(i once got in a nasty fight with my ol' man over Sammy Hagars "I can't Drive 55" music video.
it was awful.) nobody was promoting social disobediance. there was no inciting of riots. who the hell DOESNT like to drive fast? if you say you dont you are a liar and i will be happy to tell you so to your FACE. no speeding tickets you say? ok, then you are just creepy. pls stay away from my kids ty.

wow.

what a tirade over just a few fun songs huh?
hehe. like i sed, i feel damn good today so there.

i dont get days like this very often so i will rant or yell or cry or sing if i damn well want to.
i recommend you do to.
you never know when your tickets gettin punched.

I'm kinda lucky. i have a terminal medical condition.
some day soon, the tumor in my head will cease responding to treatment and i will die.
as it has already grown to a size that is dangerously close to stopping important shit like heart pumping and breathing, so i wont have much time. likely measured in weeks, but who knows.

no one knows. i have been given a warning and time to tell those important to me that they are important to me. if u get hit by a bus tomorrow, will you have said what you want to say to those you got stuff to say to?
i hope so.

my ramblings here help me express who i am and my beliefs.
it is a very therapeutic thing for me.
maybe my kids will read some of this later when they are older and understand.
i hope so.

dont be a freak spending, but dont be a freak saving either.
dont be afraid to go out for the weekend, you just might not have the time you think you have...
later doesnt turn out like ya planned.
remember what u thot things would be like after high school?
uh huh.

a friend once said to me..."heeeey im still putting it together "
i gotta try and remember that.
my dad put alot of pressure on brother and me,
to be the best we could be,
i get to caught up in that and try to hard to be perfect.
i push myself and my kids too.. to hard.
i gotta chill.

speaking of chillin'...
my kids have finished grillin some chicken on our BBQ
so i am gonna go do just that..chill.

i'll turn the music on my computer and just...chill.
btw, cleaning out a box of "stuff" recently i found a freekin 8-track of mine with STYX, "The Grand Illusion..."
how's THAT for a blast from the past? (my hair was much longer then, also something condemned by my dad and his crony cop friends.)

peace out boys n girls~!

today...

2010-03-16T15:37:00.000-07:00

i re-started avastin injections this week after a two week delay due to a severe bout w/cellulitis that left me hopitalized for five days and that i continue to fight on the home front with daily oral antibiotics and treatment at a wound care facility.

my first treatment was yesterday and as usual it has left me fatiged and sore...

i also have a PT nurse that visits me here at home to ensure i do some mild excersizes to keep my limbs and blood moving. she often leaves me sore, tired and sweaty.

doctors orders to keep my bum leg elevated give me reason to be a bum, although i do not always adhere to these instructions... email, blog and innernet in general becon me relentlessly.
as does the fridge and kitchen. my youngest daughter loves the foccacia that i make and with my merry christmas to me food processor it is a snap... before it was all by hand and this made it prohibitively difficult. now, i have a very good recipe and brush the top with an olive oil, butter and italian seasoning mixture and it is gone before i know it...
it also works really well for pizza, stromboli etc...
Focaccia alla Ligure - Ligurian Focaccia

several new and old friends check in on me and i find that comforting. it is more that i expected and from sources i did not expect. other sources friends etc that swore to assist in anyway now refuse to answer calls, return VM etc. it shouldn't surpise me... their character has long been apparant, i had just hoped that my cynisism was unjust, that i was incorrect about these people, alas time has told its tale. bummer.

i feel like i have beat the odds in some ways.. i am still alive, often alert and still able to walk or at least motor around in my electric scooter. my daughters seem to have faced this dilemma fairly well. they sometimes show wear from uncommon demands on their time, but overall they are doing well emotionally and academically.

thats all i can think of for now
PT therapist is due here soon.. gotta rest

later all ~!!

Twice Told...

2010-03-13T14:48:00.001-08:00

Well.....

As readers here should know, I have a brainstem tumor, diagnosed over two years ago.

This condition and the treatment of have left me with a weakened immune system and I recently contracted cellulitis in my right leg that required a stay (5 days) in the local hospital for a rigorous anti-biotic treatment.

Today I went to the same hospital for blood work related to my treatment(s).
Several of the technicians there recognize me readily due to my frequent visits for this blood work.
She related a story to me that my daughter found alarming. I found it curious and a little spookie.(yes "ie".)

She told of a visit she had to the same room that I occupied in my last stay.
The patient there shared similarities in his last name with my last name and he told of a phone call he received on the hospital room phone.

The female voice warned this to him, "Cliff Bickle - I'm gonna get you ~!", in a stern and sinister tone and hung up.

Kinda weird. Kinda creepy. Anyone that really knows me knows that such a call won't scare me in the least. Not on my worst day would I feel compromised by such an utterance.

I am intrigued by the thing. I am sooo bored. A rumble would liven up my day.
You better bring a big BIG stick.

It's clobberin' time~! (if i knew who to clobber dangit.)

Aah-well...

Until they peek out and show themselves again I just gotta wait.

Rock On...

2010-03-09T12:37:00.000-08:00

I just got home from 5 hideous days in the hospital from a still existing infection in my leg…

The slightest little scratch or whatever for me can turn into a life threatening condition overnight, and this one did. Unfortunately, the time in the hospital threw me off of my chemo schedule and I have yet to return. Oncologist sez finish antibiotic regiment and skip next oral chemo round and pik up one week from now and we’ll see what’s what… feels a little dicey approach to handling the treatment that is supposed to keep me alive but WTF.

These bouts of hazard wear me out physically for sure, but that also wear away the foundations of what mental health I have left, often bringing me precariously close to demise more often than I care to admit.

Today there is a (another)new dawn. There was a time when I was surely close to hell fire. My ex was fighting for custody of my beloved children, local law was constantly loitering about begging reason to carry my carcass off to jail, the bank was muttering of foreclosure and but for the church we would have been eating bugs and dirt.

I tell you I did not blink. Nor flinch. Nor soil my pantaloons.

I spoke with clear unwavering tone.

From the outside I appeared aloof.

Inside I was sure and confident. I wasn't going down without a fight.

If it was a fight you wanted I was ready to Bring It.

If you felt froggy, Jump. We'll go. No sweat.

Today screw you.
Today I have a second wind (thirty-second?).
Today I’ll bite’ya if you get to close enough.

Today none of these haunting things will better me.
Today none of you who dare challenge me will succeed. (my stupid ex is comin to town : )

Bravo huh?

He-he I sound like an old movie… “I’m mad as hell and I won’t take it anymore~!!”

(Well, I ain’t)
I’m comin back swinging, God knows I got enuf to swing at.

damned clock...

2010-02-21T05:20:00.000-08:00

greeaat~!

here it is 4:30 a.m., and again I am unable to sleep.

this happens to me from time to time. about this time of morning i find myself having to decide if i try and eek out a few hrs sleep until the sun comes up and asks me to rise and act in a somewhat civilized manner. accomplish all those waking hour things, like pay bills, feed kids, (and myself), over see homework, dodge bill collector phone calls etc, or do i just submit to the loss, get up and drudge thru the coming day short on sleep?

crap. i just ain’t as young as i once was. all nighters take their toll inna big way now.

today the coin landed on 'get yer ass up and deal.'

so soon i will be staggering into the kitchen and making hot breakfast for my kids...

likely sourdough pancakes and a glass of orange juice.
they will likely be thankful if i accomplish preparing the meal quietly enough to not wake them clattering dishes and pans...otherwise they will be typical grumbly morning teenagers.

another cost of this Slumberous Interruptus (sorry, its early, or late, or something - and that’s my Wile E. Coyote Latin – in my head, it’s funny)... anyway, another cost is that the stress it causes my body and mind can easily translate into significant pain control problems, so I will be loading up on morphine early in the game.

i’ll need to be careful today to not be bitchy or my kids will gang up on me and compound my hangover like discomfort. I am hormonally outnumbered in this house and should better learn to keep my head down and my mouth shut.

Good morning all~!!

surreal...

2010-02-19T20:01:00.000-08:00

The Universe is a funny, funny place.

Lots of odd circumstance dangled in front of me these days.
If there is a cosmic lesson to be learned here the instructor is surely having a chuckle with this humble student.

<"watch him do this~!">

like giving a four year old a 9 volt battery to test on his tongue.
i gotta sit back sometimes and think a bit. maybe look around for the candid camera.
yes, i said candid camera. how OLD did u think I was?

I love thundertorms...

2010-02-09T09:44:00.000-08:00

Tuesday, February 09, 2010

Woke early this morning.. have been sleeping a lot the last few days so I guess I was rested enough to start today early.

The light show and subsequent thunder was awesome...Invigorating…both of my daughters love love love thunder storms. I love that they enjoy the awesome demonstration of nature’s power like that…its great. This mornings thunder woke Miranda.. she enjoyed it but not enough to come crawling out from under her warm comforter.
To have storms so close and powerful that when you go outdoors the hair on your arms stands up and the air around you seems to just sizzle…Makes me feel alive, even past the crappy tumor and all the meds.

Last weeks Avastin kikd me just a little and the first day of Temodar this week kikd me hard…so far today is about mid way. Time will tell how heard this week will be…

I hate chemo. Its nasty nasty business. But it has kept me alive. Given me more time. More time with my daughters,…friends…family. For that I am grateful.

It’s an ugly medicine to fight an ugly disease. I, like many brain cancer victims, am very young. Early forties is way to young to have a terminal condition. Some may argue the use of the word victim, or the “terminal” condition posture. Although I can agree that keeping a positive mindset can improve ones physical and mental condition it is often difficult for me to keep the “thankful for what I have” attitude. Brain tumors aren't caused from smoking or alcohol consumption or anything else, so "victim" works. Just gotta be careful not to think your a "victim".

I certainly have made sacrifices for my kids as all parents do, but I feel like I am being robbed of so much. Lots of things I am unable to do with them now and lots of things I won't ever be able to do..
It’s not easy to not focus on the negative. Each morning I must remember what meds I have taken and what meds I need to take. Any error could prove to be disastrous.

I have found answers to the challenges of things like loss of mobility...not driving, not walking.
They are often hugely inconvenient. I feel as if I am bothersome to those I ask for help. Everyone is busy with their own lives. Who has time to drag my carcass off to dr appt.’s or grocery stores?

My daughters do a good job of taking care of those types of household chores for now, but occasionally we need a little assistance.

The good news is that I am walking again… I mean I am able to walk again. After several weeks of not being able to walk, and needing help to stand more than a couple minutes, I can (for now) walk from one room to another without a walker or wheel chair. It feels good. I am losing weight for the most part albeit very slowly.

I am off for now… watching for new blog material…it seems like I write the same stuff, over and over. Soo boring~!

Judged by 12…

2009-12-29T10:39:00.000-08:00

How long has he been in office?

Three events...(four) have put us in a mood. If they haven’t they should have.

One military base, The White House, and most recently...an airplane.(or two)

Two of the criminals have direct connections and contact with fucking Yemen.
They are not "suspects". They are not innocent until proven guilty.
They are guilty and should be treated as such. Criminals of war. Fuck your civil rights bullshit

Each of the transgressions occurred due to human error. Complacency.
The greatest nation on the planet and we're gonna be brought down because some dope is sleeping at the wheel.... (You think I’m talking about one or more of the stooges responsible for each of these sideshows when I could be talking about Mr. Stooge himself.)

Didn't a plane (Northwest 188) just recently miss the freekin' airport it was supposed to land at because the pilots were - what - scratching their asses? ?
( o.k. I have before spoken of my disdain for e-mail forwarding and lazy copy/paste blogging etc. All to often it makes writings bloated and tiring, but I have succumbed to the humor value of certain works and conceded to the voices that I may be a bit neurotic occasionally)

from: http://www.minnpost.com/douggrow/2009/12/16/14364/ntsb_report_heres_how_to_overshoot_an_airport

Remember David Letterman's Top 10 list about the flight?
The top three "pilot excuses'' on the Letterman list were: 3, "According to our map, we only missed target by half-an-inch.'' 2, "For a change, decided to send luggage to the right city and lose the passengers.'' 1, "Thought we saw balloon boy.''

The article later explains the following:
They had to know they were in trouble because traffic control wanted to know if "the cockpit was secure.''
That question was asked on two separate occasions because air officials in both Denver and Minneapolis were discussing whether fighter jets needed to be scrambled to check out what was happening with Flight 188.

OK.. Singularly you might let all these events go by as you rush through your day…

They seem so far away.. Do they really affect me? Dropped the kid at daycare, gassed the car, mailed all the bills…I’m good!

9-11 was so long ago.. far away from me here in CA….

Here's how it affects Y-O-U.

Well, three security breeches set the country on heightened alert…

Some dumb ass pilot asleep at the wheel over shoots his stop and a coupla fighter jets get scrambled…

The co-pilots answer to the control towers question of are u ok?” is garbled and misunderstood because his mouth is full of philly cheese steak samwhich slurping a Coke-cola (the original recipe now known as “Classic”, not the crappy new recipe) while taking his union specified break no matter when or where his fat ass is so the scrambled jet fighter shoots his happy ass outta the sky.

My kid was on that plane.

All that seemingly distant political drama just came home.

That’s why we are there.
That’s why we have to go there.
That’s why we have to be there until it’s done.
This is why have to give them permission to do the job that needs to be done. All too much energy is spent worrying about someone’s or a group of someone’s rights or feelings or whatever.

Someone will die.
Will it be your daughter? Will it be your son?
As a society we have become to comfortable.

We have been sending someone else out to collect chickens and eggs.
We forget that somebody hasta collect eggs and hatchet the chicken.
Feathers get ruffled. It’s OK.

We are still “there” because the job isn’t finished.
It’s ok to break a few eggs.

Don't forget that someone somewhere has to do the jobs you don't want to think about.
Our (your) society won’t function unless they do.
Remember that when you want to complain about one administration or another.
Don’t bind the hands of those that ensure your continue comfort level.

My daughter went to visit a friend this week while she is off school on Christmas break.
She flew to where this friend is.
Although the flight is domestic to domestic, and has different security concerns than something coming from say…YEMEN…But if her pilot “over-shoots” his destination then all those global concerns become of interest inna hurry.

So when the news flashes across the screen of my t.v. about another airline/airport “thing” it gets my attention.
I will feel better when she is home.

BTW, the last “terrorist” purportedly had the liquid explosive sewn into his underwear. THAT takes balls~!

Ramble enuf for ya?

Keystone Cops

2009-12-09T11:52:00.000-08:00

Say what you will about George W. Bush, but that poor bastard walked into some of this nations worst problems a president could have to deal with. From Jump Street, he was hammered with bigger problems every minute. More than I can even imagine having to deal with. Have you seen pictures of him at the beginning of his tenure and then at the end? He appears far more aged than the calendar will attest.

The patriot act is unfair, illegal and immoral you say?
When was the last attack on American soil? An American military base or entity?

Hasan, the shooter at Fort hood, was an American soldier of the Muslim faith. He had sent e-mails last year and this year to a radical Muslim cleric in Yemen, (FREEKIN YEMEN !!!!!!) U.S. officials have said. Intelligence agencies discovered the messages, but joint terrorism task forces determined they did not warrant further action.
The New York Times quoted an unidentified congressional official on Wednesday as saying the messages "were not overtly aggressive," but "should have raised flags."

Some will argue he was not a “terrorist’. That he acted alone and not a as a part of a larger organized entity. I disagree. I believe his actions, whether directed or otherwise affected by others were intended to cause maximum damage and fear. Clearly an act of terror and an act of war. He is, as defined by his actions, a radical Muslim fanatic. And terrorist.

He should have been noticed and detained long ago. We are still in Iraq and Afghanistan because too few people died on 9-11-01. (Think pearl) We as a society, as a nation, want to forget the horror from that day. We too easily want to forget,,,want to forgive. We need to stay pissed off. (Think pearl) See the pics and video again. Do you see those peeple JUMPING out of the window 100 floors up? (Think pearl) Did you see the cops and firefighters running INTO the FIRE to rescue those who needed rescue?
We need to get mad enough and stay mad enough to finish the job.

Although things have calmed somewhat, great Britain continues to experience acts of terrorism on public targets at a more frequent rate than the U.S. This also true for Japan and Russia.

Know that if we don’t go there and get those animals, those animals will come here. Hasan was just one guy, and he only killed 13 people. The patriot act and eaves-dropping caught his communiqués. Discretion gave him a pass. <> Again, the failure was judgment.. someone became complacent. It’s ok. He’s ok. We have to be tolerant remember? He has the right. Right?
I have no more room for fanatic Muslims than I do for fanatic Christians. Witnessed knocking on my front door when I’m eating a baby backs playing Late September Dogs…

Racial profiling? Fuk you. Its not profiling. I don’t care if you think it’s fair. It’s not profiling when a lion picks out the lame wildebeest out of the pack. He sticks out because he is different. He draws that attention unto himself. THEN he whines that he is a victim. Thank God we wont have to hear him bleat for long. Geez.
Hasan should have been “gathered” up sometime ago. Somebody got too worried about hurting his feelings or offending his right to be Muslim. 12 people died for it.

The Salahi’s got past all the security “machine” processes and socially engineered their way past what is supposed to be the tightest security screening in the free world. One little James Bond / Batman cyanide scratching poison ring and they could taken out the pres, vice pres and Benson.

I hope staff has all had their swine flu vaccinations or we could still be at risk as a nation.

The damage these goonies have done to the credibility of our governments security capabilities is unmeasurable. How many corn fed hillbillies will now be inspired to at least TRY to sneak a picture with the pres’? Whats next? Crop circles in the WH lawn?

Below is a portion of a publication form CNN about these dorks, and it seems to mirror my views …
Here:
http://www.cnn.com/2009/OPINION/11/28/rollins.party.crashers.whitehouse/index.html?iref=allsearch
Prosecute the White House gate-crashers
By Ed Rollins, CNN Senior Political Contributor
cnnAuthor = "By Ed Rollins, CNN Senior Political Contributor";

November 29, 2009 9:28 a.m. EST

Editor's note: Ed Rollins, a senior political contributor for CNN, is senior presidential fellow at the Kalikow Center for the Study of the American Presidency at Hofstra University. He was White House political director for President Reagan and chairman of the National Republican Congressional Committee.

New York (CNN) -- The gate crashers Michaele and Tareq Salahi want to be famous as stars of reality television. I am all for that. Give them a reality television series and call it "Trial and Jailtime" in the D.C. criminal justice system. This despicable, desperate, duplicitous couple disgraced the Secret Service and embarrassed the president in his home.

They totally overshadowed the president's meeting with Indian Prime Minister Manmohan Singh, the leader of an important ally. The incident made the Obamas' first state dinner, honoring the prime minister and his wife, Gursharan Kaur, fodder for comedians -- and it certainly raises security concerns for other world leaders visiting at later dates.

The gate-crashers need to be held accountable and not glorified.

Unless they have some excuse we haven't heard yet, the Salahis deserve to be charged with criminal trespassing and lying to federal officers for starters. Yes, they dressed for the occasion, but the Salahis are no different, and shouldn't be regarded any differently, than a nut case who jumps over the White House fence and tries to run in the front door. The only difference is that the fence-jumper would be shot ten feet from his entrance point.

Now this stupid post is a big fat fake. I copy/pasted a fat portion of the content which embarrasses me muchly. I would so prefer that my blog was just My Blog. I miss the days when my brain put words together better… But it helps make my point and also reassures me that I am not a raving ranting lunar-tic as I am occasionally accused.

Ed later writes this:
“So I have to tell you I am appalled at the comments by the Secret Service spokesman who was described as saying it hadn't been determined whether party-crashing is technically illegal. He went on to say he didn't believe the Salahis posed a security risk. Spin control is not needed now. Responsibility is the key word.”

They may have not intended a direct immediate risk, but they have left this cigarette ember quietly smoking in recesses we are not yet aware. But know that somewhere, there is a small orange glimmer, awaiting a puff of air to give volume to his voice and be heard by the world.
Where will he be when he speaks? Where will you be?

One of the most famous quotes accredited Benjamin Franklin is: "Those who would give up essential liberty to purchase a little temporary safety, deserve neither liberty nor safety."

Get al cliché if u wish, but I feel fairly safe here on American soil. Well, I did.

sinking one at the buzzer...

2009-12-03T11:04:00.000-08:00

Asking my oldest yesterday how her sisters game went returned this freekin answer...

"She sank the winning basket (again) at the buzzer"...in a half "oh btw..." and "can u freekin believe it..." manner...

I've been in really bad shape for awhile and simply unable to attend her basketball games with few exceptions this year. I am grateful to her Mother for helping me attend the few games I was able to make it.

Miranda often attends her games in whole or part. Taking snacks and drink for Mariah and her team-mates..and a much needed ride home.

Mariah ~! The one I was so afraid was going to remain petite and soft spoken to her own detriment..has found her voice and is clearly speaking up.

She is still the smallest in stature on her 8th grade basketball team, but she is in mix, bumping and chesting the biggest girls out there... taking fouls and drawing them. Taking the ball away from giants and carrying it to the end of the court. freekin' aye gf ~!!
Watching her run from end to end on the court and push those girls oughtta the way is just great.

When I asked Mariah about it..why the hell she didn't tell me about it when she got home...She replied.."It's no big deal Dad"... Sheesh.. No big deal. - Runt.

I have no idea where she found any athletic ability. Surely not from me..or her mother.
I'm just happy she is pursuing something she has interest in...on her own. Not just mimicking the interests of mine or moms or whatever...

She's gonna be ok..

nearing...

2009-12-02T16:26:00.000-08:00

Continuing difficult days here cause me concern.

My hands are numb in ways that that have not been in the past..

My head hurts. Adjustments in meds isn't helping. Isn't affecting.

The continued albeit gradual progression of symptoms despite new treatment makes me think there is new growth yet to be proven by MRI. The next one isn't scheduled until January sometime but at this rate of degradation, I will see the inside of a hospital somewhere before that.

Custody battles continue to loom on the horizon.. What a huge hassle.
There are better ways for all of us to deal with the stresses an difficulties we face in this. Only time will tell if we get our shit together in time. Its a messy gig either way.

I dont know how to make this better for my kids. I struggle to balance their care and mine.

This is certainly bigger than me...So often I have overcome barriers, challenges. Rather thot I was pretty rugged. Not this time. I'm beat. OK?

I get it. I am humbled. Can it all stop now?

Turkey Day....

2009-11-26T21:17:00.000-08:00

Just a quick note about today....

Successfully steered out of a pain episode tonight. If I hadn't pulled it off I would have wound up in E.R. The right drugs the right way and ice therapy and mentally chasing the pain away. I know, sounds crazy to some people but if have chronic pain you probly know of what I speak.

I had several offers to come to dinner from friends and family today and the days leading up to now...

Some were fairly unexpected... some from ex-inlaws etc... wow.

Two people brought Thanksgiving Dinner to me as well..tiramasu cheesecake~! pumpkin pie - apple pie - ham - stuffing - more stuffing - ... ohh !!!! I'M STUFFED.
I have more damn food here than I can eat by my self inna week~!

My kids come home from their T-Day visit with their Mom and family Saturday night so I'm alone 'till then. I was nervous about it for a bit, but I'm gettin' better.

I have been bitchy with my kids lately.. letting my condition get the better of me. Being in pain, unable to do things - - walk or bathe very well...it gets to me after awhile.
The girls dont understand. Hell, I dont know if I understand...

Anyway..Plenty to be thankful for today..cant complain...
I hope all your days were as good as mine.
I had pumpkin pie and apple pie..and theres still more pumkin pie and tiramasu cheesecake ~!

Rest well... There are plenty of leftovers to tend to tomorrow... Turkey pot pie usually does well here...Mariah always looks foward to turkey bacon cheddar sandwhiches.

I am both content and uncomfortable...
Are you?

seemingly...

2009-11-21T11:44:00.000-08:00

After seemingly endless days of being just miserable, I woke today feeling well.

My body, although still numb and mostly unresponsive to my desires to function, isn't screaming at me at every thought of movement.

I can eat, I can see. Today, so far, is looking good.
I thot about trying to make pancakes and bacon for breakfast for everyone here, a surprise breakfast. I didn't get far. I got bacon cooking in the oven in a skillet slow and easy, the only way I can do it now (it's better that way anyway). Miranda helped me pull it out but it was cool to have it ready for her to have breakfast..she's running late for work.

The others are still sleeping 'cuz they're bums. I've been up for hours. I get bored, there is only so much freekin' daytime t.v. one person can stand. I get bored and I wanna eat. The steroids compound this problem.

Today promises more holiday theme baking... I look forward to the wafting perfume of melting chocolate and sugar from my meager kitchen.

Holiday treats + steroids + insane boredom = too much Cliff.

More later...

happy place...

2009-11-12T16:04:00.000-08:00

I amtry trying to find my happy place...

I SOO would like to write something balanced... blogs have been blechy lately...

Christmas season is here again which I love because its an excuse to eat junk food comfort food all damn day.

Muffins and cookies and candies (all preferably homemade) fudge and Martha Washingtons and an awesome pumpkin chocolate orange muffin thing from my ex that is to DIE for...

Crockpots simmering with scratch soups and pastas and thick rich cocoa (snchaaps helps the kids sleep ssshhh ~!)

Oh yeah,, Twisted Sister doing all the Christmas classics in the background is just right....

tumor treatment saga continues...

2009-11-11T17:24:00.000-08:00

Chemo, day two

Wrote blog yesterday, forgot to post it until today… what a bum huh?
Writing again today, hopefully it will get finished and posted today as well…

Wanna try taking chemo a little earlier in the day today… it’s a process.. takes hours to do right and pain episodes are becoming more frequent and difficult to manage so I am irritable.

They aren’t kiddin’ when they say Temodar causes constipation…Something I’m sure everyone is glad I am sharing… geez.. Day two already. Damn.

An hour and a half after the dose my tummy is shaky. Ick… But I am still hungry as hell.. dangit.

There is no one to talk to about prognosis, more specifically my prognosis (expectations).
No one that doesn’t freak when the topic of end-of –life or right-to-die topics come up.

I simply wont live like this.. I refuse. I refuse to accept the lower and lower quality of life simply because it’s gradual in its declination. Like the damn frog in a pot of water. Everyday becomes “o.k.” because “it’s not as bad as it could be”, or because it’s “only a little worse than yesterday”.

I Wanna new drug ~!

2009-11-09T17:45:00.000-08:00

Despite a harrowing, harrowing start outta the gate, I made to Avastin treatment this morning.

My weight is up to 228 again, which pisses me off. Damn steroids are gonna kill me if the gdamn tumor doesn't. Up 30 lbs in 3-4 months. sonofaB.

I am hoping that I get the results from the chemo and avastin so I can reduce or quit the decadron. It is admittedly by all accounts a nasty nasty drug. It ravages my body relentlessly, physically, emotionally, you name it. There are few if any alternatives.

Local oncologist says o.k. to start oral chemo today. It was mailed to me weeks ago prior to my vacation in I.C.U. at the local "hospital", then delayed at the advice of the same oncologist to ensure my body was strong enuf to handle it. Both Avastin and Tremadol have been reported as well received, so I am hopeful.

Avastin and steroids are pushing my blood pressure up to a point where it needs to be managed by yet another drug. ho-hum.

Mariah came home from Bball game with wounds.... I love it. Battle-scars. Drew a foul or two too... No sissy laa-laa girls here... From young age, I taught her how to throw a punch the right way... and that she can defend herself when she has to. I explained that she can always choose to walk away from affray, and she ever strikes first I will own her ASS. She seems to have that judgement well balanced. Just edgy enuf to keep the other girls wondering how far she will go...

I am stoked.

back to the stone age...

2009-11-01T21:24:00.000-08:00

an integral component of this family has gone missing and each of us is painfully aware of the absence.

it seems the remote control is in hiding, and is as of the time of this writing, yet to be found.

alas, a replacement will likely be forthcoming as my patience wears thin for such.
(which, btw, is likely the best way to bring the damn thing oughtta hiding)

Barbaric or merciful?

2009-10-18T19:06:00.000-07:00

Will you help me....

Die?

What a scary question...
Certainly not something one ever wants to hear.

A very taboo topic in polite company.

What do you do if your best friend poses this question to you?
What if it’s your brother? Your mom? Your son - that poses this question?

What it must take for a person to reach a place where such an idea is even considered
It’s very verbiage indicates some thought had been put to the idea.

Even now, I still have occasion to need advice from a parent when facing life’s hurdles.
How can I possibly consider leaving…mine are still so young.

I certainly don’t want them to have to watch this deterioration.
Locked in the theater, the endless horror splayed on the screen ahead.

I am grateful to my disease for some things…
To see the strength in my daughters… the oldest so patient and understanding with me.. never complaining when I need driven to ER for another pain episode that I can’t get under control despite the barrage of opiods here to throw at it…
I am confident both will handle life’s hurdles well.

My mom’s illness petrified me and I ran.
I avoided contact with her... I think because I didn’t know how to help her… I felt helpless
I didn’t do for her what I should have... I regret that deeply…
How my kids have the strength to do it I dunno… maybe they are trapped here and just do.
I’d like to think its because I have taught them well.. given them the resources they need in life to be strong, healthy…They help each other and work well together.
I feel guilty when I want to give up…

My own battle with mental health issues.
I remember standing in the hallway of our home..13 yrs old…
A closet at the end of the hallway, stores uniforms, a Kevlar vest, a gun cleaning kit and half a dozen handguns or so..
The smell of gun oil and shoe polish waft into your nostrils when the door opens.
A small snub-nosed .38 with the hammer spur filed off has come to fit my young hand well.

Pressed under my chin more times than I can count…throughout my teen years.. begging to stop the nagging endless noise in my head that no one else hears...
Until now, only one other person has ever known that this ever occurred.
I would be well into my 30’s when the noise would be replaced by sheer blank emptiness.

Watching Mariah with similar struggles...frustrated with the world around her.
I know she is experiencing the same challenges...I see it…
I hope to be able to help her manage this so that it doesn’t affect her life as negatively as it has mine.

A new MRI shows tumor growth.
A cm in three months.
That doesn’t sound like the slow growing this thing is supposed to be.
My hands have become more numb, more often.
My right hand is pretty much useless most of the time.
I worry that I will reach a point where I am unable to do what needs to be done.
I don’t trust anyone near me to do it.
I’m afraid I will be stuck somewhere, unable to affect my own treatment.
That scares me the worst.
I have my own hospice thank you.

Eureka ~ !

2009-10-10T13:59:00.000-07:00

Wow..

It”s been awhile since I have been up to blogging…

Physically or emotionally…
But I am sitting here now getting some stuff down.. (then I gotta put it up on the blog so in this case, what goes down must go up….)

Odd… anyway..

I’ve decided I’m a complete idiot.
I’ve always likened to think of myself as an intelligent person.
I’ve never really been afraid of tackling some perceived hurdle.. unafraid to push limits, bend or break rules….notorious for resolving bothersome workplace obstacles others could not.

Raising two young daughters on my own as a single father was daunting but easily doable in my mind

Changing careers more than once later in life was also challenging but I kept going…
So I never real thot of myself as the victim sort.. and accepting help from others was something I resisted out of..uhm, pride? (I’m a big boy, I do it myself!) sheeesh.

So lately ..being ill I have really just wanted someone to help. Actually, to take over for awhile so I can freeking rest. Spend my time and energy staying alive. getting well.
Well, being a single dad and no one else really here to do shit, I don’t have that luxury. Either we find a way to get it done or it don’t get done.

So I’ve been feeling sorry for myself ‘cuz of all the shit I cant do no mo…how emasculating and dehumanizing it is to have such simple things taken away from you...
what a wuss.

I was (and have been) thinking about simple things I wanna do but cannot.
We love food and cooking here and I love to surprise the girls with hot breakfast some mornings..french toast ort pancakes bacon easy, yummy and a cozy start to the day especially when the weather gets colder.

But I can’t stand long enough to freekin make damn pancakes at the stove so I gave up on it inna snit. Poor me.
Geez.
Is anybody listening? POOR ME! This isn’t fair damnit! POOR ME!.
Anyway.
I brag about teaching my kids to cook at like 4 yrs old. Counter top electric griddle. Bowl of bisquick mix dripping on the counter.. pancakes that don’t make it or get half flipped into oblivion all in the name of teaching wonderful giggling little girls the wonder of warm buttery pancakes and maple syrup.

The other day it dawned on me. That same griddle..would work on the kitchen table…just as well as it would on the countertop. But,, get this… the kitchen table is at a height I can work at.

I could freekin cook freekin breakfast again… maybe it doesn’t sound like much but it sure would mean a bunch o me to be able to do that. I could do it from my electric scooter chair thing…

What a dumbass. Why didn’t I think of this b4? Intelligent? Me? Apparently not so much if it took this long for me to find a solution for a simple prob.
I still will hafta learn to do some stuff left handed.. but that’s ok…

Maybe I’ve been to overwhelmed by the gravity of the situation as a whole ..to busy complaining..
Anyway..moving on.. gonna acquire a grill and commence to sizzling some bacon n eggs and pancakes.

Is this what is called a break thru?

I cant believe I didn’t find this answer sooner. What a waste of time and suffering…

Spent too much timing splashing around in despair to pull up my socks and solve the prob.
Step over the puddle and keep walking. Geez, cliff…

Cliff, yer a dork sometimes.

bummer...

2009-08-11T11:38:00.000-07:00

after days of missing calls from my brain doc we finally found each other over the phone

latest mri shows new tumor activity and doc wants try start a new drug plus chemo soon soon..

new symptoms are difficult and chemo promises to be very challenging...

we will go back to higher doses of steriods until chemo starts in an attempt to reign in the storm of symptoms..

i hate that my kids have to watch all this.

i am alive...

2009-07-19T22:07:00.000-07:00

just a quick note to let people know i am alive...

until i looked at the date of my last post, i didnt realize how long it had been...

i am finally sitting at the computer comfortably...
it has been weeks since i rested peacefully.

i have been fighting break-thru pain episodes for weeks.
despite all the morphine and norco and soma and gabapentin i take daily the pain still breaks thru and gives me episodes of pain...complete with posturing, shaking, sweating and snotting on myslef its awful...
five trips to the local ER (in two weeks), two by ambulance even... what a screaming drag.

my oldest daughter has been awesome.. she is so patient and helpful and understanding.. i dont think i could possibly ask for better from anyone..helping me thru episodes, driving me to the hospital etc..

i started an new drug for pain as the others ceased to manage my pain adequately...
a fentanyl patch... 20mcg/hr (i think) makes me sick as hell.. and isnt quite handling the pain but i think i have found a way to get thru until i can see the doc agian
i just hafta be careful not to bottom out my BP... fentanyl plus the strong opiods i have could easily kill me if i forget i have taken them and double-dose.

my youngest is home from her summer visit with mom...
i am happy... they love to say how much they dislike each other but they sure were glad to see one another.

i am somewhat unhappy with my blog content lately... definitely not as poetic as i would like them to be.. not what i am accustomed to producing.
they now sound all to often like an end-of-the-day report... clinical ... bleh.

perhaps i will find relief in this new medecine that doesnt leave me drooling on myself and i can peek out into the world again....

OH YEAH~! i hada birthday a while back... i am officially over 40 now.. 41 yrs old on july 5th ~!
wasnt sure i was gonna make it there for awhile...
there for awhile, i didnt wanna make it.

until i make it back, happy reading and blog when u can huh?~!

Uncle Cliff...

2009-05-16T12:45:00.000-07:00

A little while back I blogged about my brother and his family coming to visit.

It was nice to see them as they both work and rarely have days off together and live an hour or so away from me here in Ripon. The drive is difficult for me at best so it was really cool that they drove here.

We were waiting patiently for a table large enough to accommodate our party of seven and everyone was getting bored.
For the 4 yr old and me, that spells trouble.

My brothers kid is great. He has the energy of a 4 yr old, as he should.
He was running around meeting people, having a great time.

I soon was overcome by the boredom and my inner child overtook whatever adult was ever in me and and idea came to me. I thought to myself, What an excellent opportunity to teach my young nephew something cute. This will surely get a response from his father, and his mother will appreciate me more than ever!

"Hey Brian, Tell Daddy, "Please don't hit me anymore Daddy, Please~!"
We had a captive audience of all the other people waiting for a table that Easter Day.
It took a few tries, but it wasn't long before we all heard "Please don't hit me anymore Daddy, Please~!" roll off his innocent tongue. Music to my ears. I was sure (hoping) that this lesson would stay with him well enough to be performed at another, equally opportune time and place.

Time will tell.

Whether or not my lesson that day will be remembered by my nephew, and whether or not my brother ever shows up at my place again.

A sign of the times?

2009-05-12T15:35:00.001-07:00

Coming home from a trip to Modesto the other day...

My daughter driving (of course), we were driving past an elementary school.
I noticed several of the children, or groups of children had adult males walking with them.

Cool ! I thought to myself. All these guys are walking their kids home from school !
Being a single Dad, I am sensitive to father/child stuff and like seeing the relationship between fathers and children being cultivated in positive ways.
Great~! All these Dads out here meeting their kids getting out of school and walking them home.

Then I had to wonder, Do all of these guys work a swing or night shift that allows them such a wonderful luxury? Crap, maybe they are laid off or furloughed or some other corporate treachery that has them out on such a fantastic afternoon. (The weather this day was great!)
Maybe the neighborhood thugs, or traffic's disregard for pedestrian safety necessitated their presence.

Crap. I'll try to ignore the pessimist in me that thought anything past "Cool ! All these guys are walking their kids home from school ! " and just stay with that...happy thoughts.

What's Happening~ ? !

2009-04-28T10:39:00.000-07:00

Update~?

Most recent MRI and subsequent follow-up with brain doc confirms tumor is stable (not getting bigger or any other life-changing changes). Now we fine-tune some meds to see what happens.
Next MRI is in 90 or so days, give or take a month.

The follow-up with my cardiologist says that I passed all my ticker tests. Fancy pics show only one small calcium deposit but nothing to worry about. Doc said I musta been eatin’ healthy food for alotta years, I think he has someone else’s pics. He says I should be taking some Vitamin D and maybe calcium and a baby aspirin once a day, but other than that, no meds recommendations or dietary changes.

My vision is fantastic now...no more blurry vision or double vision. I can walk a little better, usually without the cane now.

My Pain is mostly under control, although a number of break-through pain episodes have been pretty rough.

My daughters’ tests results have all come back basically clear, with all docs indicating nothing to worry about.

Seems like some the worst has settled, the “fog of war” battling this mass in my head has cleared somewhat. For now at least.

Now can I concentrate on walking? Driving?
If I get those back, even to a limited degree, I could have a piece of my life back. My poor kid, although she loves to drive, (even though she painted the right rear of my damn car with paint from the parking garage wall yesterday~! shit.) can get a reprieve from chauffeuring me around all the time. I wouldn’t feel so robbed of my independence.

A new road starts today. I still hurt like hell, but damnit I’m happy to be off that nasty piece of road I’ve been on.
I can finally breathe.

We bought a gas BBQ awhile back. I think we should celebrate by burning something on it. The girls love baby backs, and they stole the last rack of lamb ribs I had. Maybe that’s what I’ll get. It will be good practice for the weekend ~ !

Socks, soldiers and Norco...

2009-04-25T18:51:00.000-07:00

I am occasionally prompted by others to blog more frequently… Some have expressed admiration for my writing skills…some from unexpected places… some from very unexpected places.

It is for that reason I try to more often get something down on paper, wait, up on ether...I mean the net, whatever….
The stuff that comes to me late at night when I can’t freekin sleep. I am usually to lazy to get up and write it all down and it rarely sounds as good in print as it did in my head (didn’t I say that before?)

When I look back at my blogs, I feel like I write an awful lot of negative stuff. The doom and gloom of my current medical situation. The brain tumor that never ceases torturing me. My evil ex-wife, who has barely ceased harassing me for one minute on virtually every level one can think of. Complaints of childhood horrors, the sins of my father that continue to haunt me.

Browsing such material, I feel desperate for happy stuff to write. That my mutterings for once, be positive, happy things. There are of course, some sprinklings of spirit lightening material, particularly when my kids have done something cool, just not as much as I would like.

I try to be sure and blog the good stuff…I also try to blog when my head is clear.er. And I make attempts to review my material before I upload… The damage to my brain from the radiation and the fog that occasionally comes with the pain drugs cause me to mumble and stutter…even in print.

The last few days have been interesting… I seem to be coming out of a run of several days of either several shorter pain episodes or one long one. I woke up screaming three days in a row… drugs either running out or simply not doing there job anymore. I think I have it under control now…although the pain has changed…It is noticeably different now...it is more achy now…set in my shoulders, knees…joints. The muscles in these areas...feel achy, like they are tired from over work…odd…As I haven’t done a damn thing in awhile.

One of my worst habits is putting stuff off… procrastination… I am terrible. Anything that stresses me really gets avoided… bills, mail, etc I haven’t file my lousy taxes in years. I think I have recently resolved that particular issue. Hopefully the tax guys will quit sending me nasty letters now.

Putting things off… I can always do it tomorrow, well, to some degree, that’s not a bad position to take.
Some stuff should be put off, one should make time for important things in life. Yes I know, filing your damned taxes is important, and shouldn’t be ignored. But mowing the stupid lawn can wait over taking the family out for a day on the lake. Cleaning out the garage can wait while you spend the weekend camping, roasting marshmallows and hiking among pines and quaking aspen.
I spent too many years being afraid. Fear of failure.. combined with procrastination and a healthy dose of plain lazy has left a list of “I wish I woulda”, “I shoulda’ things a mile long. I really wanted to do significantly more skydiving. I want to teach Mariah to fly fish. She likes fishing, and I think she is going to be very, very good at fly fishing. She is one helluva smart kid.

My medical condition makes me think in more finite terms. Long term projects or investments seem pointless or too much work. “Why bother if I’m not gonna be around?” It’s dumb, and I shouldn’t think that way. It’s just one more way to avoid stuff. To justify in my head, the reason for NOT doing something. My kids will learn by example, so I better get off my butt and do stuff.

My ex-stepson (?) (ex-wife’s son) joined the Marines awhile back. He is currently stationed in Iraq training Iraqi policemen for the next seven months. The girls have decided they wanna send him stuff. He has requested socks (size 11), magazines, baby wipes and snacks etc. It’s supposed to take about a week to get to him and we chat with him regularly on Yahoo Instant Messenger and MySpace etc. It’s all kinda weird. It doesn’t seem real. Anyway…
We went to Wal-Mart to gather stuff to send to him. One of the first things on the list… SOCKS~! Well, we found them alright. Along with drink mix packets to turn his boring military issue water into something more palatable. So… in looking over this package of socks I found it very interesting,… amusing.. that the things are made in freekin’ Pakistan. Made in Pakistan, shipped all the way over here, and now they are on their way back to clothe American soldiers. Very funny.

What a great day….

2009-04-13T09:47:00.000-07:00

My brother came for visit yesterday…
We went for lunch…
The first place we went was closed.. not a soul in the place, so we wound up at Applebee’s restaurant.

After waiting an inordinate amount of time for a table large enough for us, we conceded and accepted a booth. I thought it would have been a bit to crowded, as we had seven people in our group, but it was getting tedious waiting.

I was “lucky” to have the chair at the end of the table, which allows more elbow room, but ya gotta tolerate all the foot traffic around you. Then the server has to lean past you whenever she is pouring drinks or bringing food...so it ain’t all bad. ; )

My brother was accompanied by his awesome wife and child…a son 4 years old. This kid is wired for sound…he is so full of energy… seems at times more than his share. He is absolutely fantastic, completely lovable…very funny, very smart. But he reminds me of why I don’t want anymore kids. I am simply too old and tired… I couldn’t start over with any new ones… whew~! I love mine, and him, and kids in general. I just don’t have the strength for any little ones.

Anyhow… lunch was great.. the food and service were great. My kids got along well…which is cool ‘cuz they have been biting each other on the ass for days… over anything, everything, or nothing.. geez. (I’ve been ducking a lot lately).

We don’t often get to see each other anymore, especially all of us at once. My brother, his wife, kid…both of my daughters…it was really just very nice. I had a good day in the sense of managing pain and mobility, which means I was able to enjoy everyone’s company without my medical condition clouding up the day.

So anyway… This day can go in the really damn good column…In the long list of shitty days, mediocre days, good days, and days I don’t even freekin’ remember…yesterday is at the top of the list. Definitely one I would do again.

Overall my symptoms are becoming more and more manageable. I am walking without the cane more often. Pain is becoming more manageable. Hopefully this is a trend…and hopefully the upcoming tests and results will prove to be as positive.

Chalk...

2009-04-07T22:28:00.001-07:00

Chalk today up as....?

Hell I dunno...

Good day or bad?
I woke up on time...(for me, this means I was able to successfully pry my youngest out of bed in time to get her to school on time)

I promptly went back to bed and slept off and on the rest of the day.
I have an MRI tomorrow, and a trip to San Francisco Thursday and a wound care appt on Friday....it's probably good that I rested today.

One of the problems with these long periods of sleep is missing meds. When I get out of sync with my pain drugs and the pain gets ahead of me it can be ugly ...hard to get control of again.
Today was one of those days... I woke around 8:45 p.m. and hadn't taken pain drugs since this morning.... Even taking morphine and norco at the same time (which normally metabolize in 15-20 minutes) it was at least half an hour before I felt any relief. 30 minutes of crushing, sweating, cursing pain. Damnit I hate it when that happens... It just breaks the strength I need to push through. Makes me so tired...

Hopefully I rested enough today to get through this weeks appointments.

Thar She Blooms~ ! ! !

2009-04-06T16:00:00.000-07:00

Thankfully the yeast that has been stowed away in a tightly closed container in the recesses of my refrigerator has proven to still have some life left in it as it successfully bloomed when added to warm water and sugar this morning before leaving for a doc appt in Stockton.

I warmed some bottled water as the tap water here likely has way to much chlorine in it to make finicky yeast happy and added a tablespoon or so of the yeast to the bowl of water and left it alone for a couple hours.

It "bloomed" very well while we were away seeing one of my docs. Now I am sure it will properly make my bread rise the way it is supposed to...
We will make sourdough bread, french bread, and probably pretzels as Miranda has been craving them. I will retain some of the bloomed yeast to make a sourdough starter so that we will have the ability to make a range of home made sourdough stuff... sourdough blueberry pancakes, plain ol' yummy sourdough bread, cheesy parmasen garlic breadsticks, etc for a few weeks...

yum.

HEY~! I must still be alive if I am Blogging~!

2009-04-05T16:25:00.000-07:00

Hello…

Here I am, again… staring at the keyboard and computer screen…

Trying to articulate all the literary brilliance that comes to me in the middle of the night but I am to tired or lazy to get up and commit to paper (so to speak).
I often find what does make it out of my head horribly redundant expressions of previous writings…
Ramblings of pain and worry…on to wonderful reports of my awesome daughters and their latest accomplishments…

Health-wise I can’t seem to make up my mind if I am getting better or worse…
Vision is much better, with both eyes open and in working order most days. Pain management is usually under control, although some episodes continue to plaque my perception of continued progress.

My brother reminds me to try and take heart in what things I “can do” instead of the things I “can’t do”…Find happiness in the good stuff instead of all the negative.
All very cliché … just not easy to do when your breakfast includes 11 prescription meds each day and most days are spent dodging pain and planning for the repercussions for activities everyone else does without thinking…

I missed an important stress test for my heart Tuesday.. I felt so sick.. mostly tumor sick…fatigue, pain, edema, I just couldn’t make the ride in the car to Stockton...it is a whole 15 miles. It’s been
re-scheduled again.. Hopefully I’ll make it next time.

The next MRI will be this month. I dropped the ball and didn’t schedule it yet, but I will make a phone call in the morning and fix that. I plain forgot I was supposed to schedule it.. I thought they were gonna schedule it so I just waited. oops.
I am a little afraid to do it. Afraid of what they might find. Crap.

I will get the cardiac stress test results and the MRI results within days of each other. I know there is probs with my heart. It has shown in other tests. Hmm.
Dunno what to think about the MRI results.

It’s going to be a very, very long month.

Morning ~ !

2009-03-06T04:06:00.000-08:00

3:30 am what a lousy time to be so awake it screws up my schedule so bad…

Anyway, I just wanted to blog something real quick…

I wanted to describe how incredible I feel at the moment
For most people physical pleasure is equated to how one feels after a good meal, a good drink or maybe a cigar. Perhaps having sex or drugs…

It could be that for me as well…but today, right now.. it is the complete absence of pain, control of my body, and simply clear vision.

I woke for whatever reason (my daughters’ damned nagging cough probably, she’s sleeping on the other couch next to me) and noticed how well I feel…

None of the pain that had cursed me for the last several days is present..
The edema in my legs that has kept them burning hot and weepy for days is nearly absent altogether.
It doesn’t hurt to breathe or move or anything.
I can see clearly…I grabbed the awesome little dollar-store bamboo back-scratcher and chased a few elusive itchy spots on my back…(BTW, those little cheapo bamboo scratchers are the best damn dollars I ever spent)

Anyway, I’ll probably feel good like this for an hour, maybe two.. then I’ll be back to the days normal battle with pain and mobility..
The good news is I am getting better at balancing the meds…so long as I keep up on the morphine I am pretty good…Yes I know that probably makes me sound like a junkie or something.
That’s OK I suppose… The med lets me function reasonably in public, and people are allowed the think whatever they like.

Now, if I could just get Mariah over this damned awful cough.

Leftovers…

2009-03-04T21:16:00.000-08:00

Tonight, dinner consisted of leftovers…
Soup left over from last night’s dinner…plus a loaf of buttery garlic french bread
My oldest daughter sought out and selected a soup recipe from food networks website.

It is our favorite resource for recipes or information.

She chose a chicken soup recipe and we were off to the store to get what we didn’t have on the shelf.
(I had to go as the recipe called for white wine)

The soup was awesome last night, and after slumbering the night away in our fridge, the flavors had plenty of time to meld into an even more impressive bowl of goodness…

I love that she isn’t afraid of the kitchen. She sought out what she wanted for dinner, we discussed what components we had, what we could do for substitutions. How each substitution would affect the final product. She knows now nearly as much as I do in the kitchen…she’s gonna be fine.

Afterwards they each resigned themselves to a brief afternoon nap and awoke ready for the planned Smores event. They had purchased a “Smores” Maker” for me years ago, and it had gone unused for too long. (it consists of a wooden base with pockets for graham crackers, marshmallows and chocolate pieces on a turntable so each person can take a turn roasting their marshmallow for their smore)

It requires the use of sterno, and I regrettably resisted using it for one reason or another…

Well, tonight I released whatever silly reservations I had… grabbed a couple cans of sterno and told the girls we were doin’ Smores after dinner…We made gooey, fiery yummy Smores at the dinner table…they were great. I ate a few marshmallows just roasted… the smell and taste of burned marshmallow took me back to fireside roasting in the sitting in the dirt. After searching out a serviceable downed branch we would whittle down the tip and any side branches the selected tool was stashed near the campsite but hidden well enuf to keep brothers or cousins from acquiring the valued implement.
The memory is at least as good as the pleasure of simply eating the product…

The night is ending on a fairly decent note for me…I am able to walk and move without to much difficulty. The last few days have been difficult. The simple act of bringing a spoon full of soup to my mouth was arduous, slow and painful. I am at the end of the process of reducing one of my meds…
I am unsure if the new level has anything to do with how I have been feeling. I will continue at the new doses for a time in hopes that (we) find doses that are therapeutic enough to treat my condition and allow a level of conscious and functionality that I might be presentable in public.

Heart tests next week...stoopid enzyme counts are to high or something...

Wish me luck.

I’ve been at the keyboard too long.. blog more later.. my back hurts from sitting here… I need a better chair.

Later!

Man vs Wild

2009-02-20T11:32:00.000-08:00

Wow…

My home is currently being invaded non stop…by little black ants that refuse to leave. I have set out three kinds of poison.. scrub and clean and wipe the damn counter top over and over…the march continues. It seems they don’t know this is supposed to kill them.. or at least discourage them sufficiently to go elsewhere….
The crap I got at walmart did little to ward the little bastards off so I went to home depot in hopes of finding something a little more robust. One of their associates was more than happy to help me find a few things and even offered special assistance in checking out, handling my purchases etc.

My oldest kid convinced me to leave shortly after finding what we needed, narrowly averting the dreaded up and down aisle after aisle lost for hours in delusional wandering…

Leaving home depot, Miranda wanted a slushy from the place in front of the store.. she remembers them fondly and had her heart set on one.. so we got her one and mariah was hungry but when given the choice preferred in ‘n out as opposed to the dog or smoked sausage on the menu there….

Shortly after getting our food at the burger place… a guy came up to our table, introduced himself and asked permission to pray for me. To pray for healing and relief from my pain. Healing for myself and for my family. Seems he was passing through…lives up in the Mariposa / Yosemite region and felt compelled to touch me. Hmm.
Thank you, Dave.

I must really look like hell…twice in the space of an hour or so, total strangers went out of their way to try and help me…
I’m wearing clean fresh clothes,, brushed my tooth…kids were very well behaved…
Geez.

In the wild the lame get eaten…
A limping or lagging herd animal is quickly consumed by a predator.
The culling of the weak ensures the survival of the stronger of the species…

Evolved are we?

Uhm..
Unsure what to think of yesterday.
Still processing…

Feedback is welcome…

title? I hate trying to title these damn blogs...

2009-02-18T21:27:00.000-08:00

Have had another run of crappy days…mediocre success managing pain.
Makes me real bitchy…Not fair to other people in the house, but they do a pretty good job of recognizing when I’m hurting and don’t take it personally.

Latest on tumor status is just waiting… watching... reducing meds…watching monitoring symptoms. MRI’s for me will be months apart now unless new symptoms require sooner.
Stress tests for my ticker next week… Seems the steroids used to treat the tumor in my head have lead to a buildup of water on the left side of my heart. Some elevated enzyme count indicates trouble I should be checking on. Hmm.

Mariah is also at a “monitoring” status…her pediatric ophthalmologist basically said “no worries” regarding the findings in her last MRI so I am breathing a helluva lot easier.

Me - ? I’m trying to stay focused on big picture stuff.
Some people tell me - - Try to focus on what you can do not what you can’t do.

That’s an awesome cliché’. It would be even more awesome if I could.
Ain’t easy to do. Yeah, I know.. I should just do it. Right? The problem is, I have too many days that are completely consumed with doing stuff that should be brief and simple.

I can’t drive my happy ass to the store for groceries or to see the doc or pick my kid up from school. Simple stuff seems to take a long time. It gets to be a drag.
I know it’s not the end of the world… Lots of people get along with no car at all, so it’s not that different. Losing my independence is difficult, disheartening.

I would just like to be able to do those things…little trips and stuff with them would be nice.
So we are somewhat limited to “family” time together here at home. All three of us like food and cooking so we find the kitchen comforting.
Mariah and I made like three batches of cookie dough the other night…We haven’t baked them yet, and between the two of those girls I am lucky there is any cookie dough left to bake at all.

Mariah cooked dinner from beginning to end the other night for her sister and her bf, herself and me. She loved it…breaded chicken tenderloin strips, made potatoes and corn…refused any help.
None of it from prepared bags from the freezer. No heat and eat here.

Either of them can handle themselves in the kitchen with no reservations…I started working with them when they were each about four yrs old…spilling pancake batter on the counter top~!
We had one of those electric flat countertop griddles, making pancakes with Bisquick mix. (I like to teach them how to from scratch, but we’re not always completely neurotic).
Anyway, they can do just about anything in the kitchen they want to… even handling flare-ups come off without a flinch. It comes from having the “hands-on” “yes, you can do it” experiences. I let (make) them do things themselves. They hate it sometimes. Watching them learn…seeing them learn…is just awesome. I try to help sometimes. I start to explain something, teach something and they roll their eyes or get frustrated with me. “Dad! I know how to do it, leave me alone!”

here again...

2009-02-03T16:50:00.000-08:00

I've been sleeping for days...

I've been trying to evolve from focusing on me in this mess, to focusing on helping my kids through to the ultimate end that seems to be creeping closer than expected.

It's not easy to do when so many days in a row offer no physical or mental relief from the pain.

Crap.

Discord...

2009-01-22T23:10:00.000-08:00

Years of strife…
Separation… from me...from them.
Purposefully orchestrated by you...over a willful lie
Time seems shorter now…time is shorter now

You should be ashamed for your actions...more-so ashamed of your lack of action…
(yes I know that “should “ statements are dangerous)
I don’t expect you to understand that ..nor do I expect you to try to understand it...nor do I expect you to even want to understand it)

you’ll proclaim some misguided duty or honor..
trust me it only exists in your world…
here, it’s just sad…you injure those around you with your prideful acts

years have passed since…likely more than either of us has remaining…
how much longer will you continue?
can you not hear the alarm sounding? It continues to ring…
subtly louder and louder as time passes…there is no snooze button…
you simply ignore it…indignantly…

what will you hear when it goes silent?

I wonder if they…if I – aren’t in some way shielded, protected…from further dolor in this separation… perhaps.

they can’t miss what they haven’t had…what they haven’t had the opportunity to experience.

find that in your elegant self-assigned code of honor.

Unfortunate.

.

Silver Bells..

2008-12-24T03:06:00.000-08:00

City sidewalks, busy sidewalks

Dressed in holiday style~!

In the air there's a feeling of giving

Children laughing, people passing,

Meeting smile after smile - - -

And on every street corner you hear...

Hey Sweetie, Have you Seen My Mistletoe Belt Buckle? < ;) >

a blog posting...

2008-12-23T07:00:00.000-08:00

Well hell…

I love to write.. It feels good.
I like to think I am or was good at it at one time…

I’ve been published…in a nationally printed magazine, and as early as the fifth grade so in the local paper, so I imagine I ain’t so bad.
One problem is tho’ I tend to ramble a bit…very often a bit verbose.
Trying to be perfect, I express everything I want to say in fine detail.

Then, at the risk of not getting it just right I wait to hit “submit”…so things sit on my desk until they no longer relevant.

So, here is the Cliff Notes version of the Readers Digest version of the most recent blog attempt.

Please forgive the horrid grammatical and other errors…

Last January I was diagnosed with a brainstem tumor…
It is believed to be caused by a genetic condition called Neurofibromatosis-1 from my moms’ side of the family.
Its also believed to be benign, but benign just means it ain’t gonna break off and set up shop elsewhere in my body.
It’s still is choking the life oughtta me thru my brainstem… things like vision, taste, breathing, heartbeat, bowel control… all will degrade over time until I am completely without control…

Soooo…

Nf-1 has always been a fact of life for our family. But was mostly disregarded as a nuisance. Chalked up to a condition of mostly of cosmetic concerns…usually small fibroid tumors that from just under the skin…although other more serious tumors can and do form deeper in tissue…
The medical statistic says the chances were 50/50 that a child of an nf-1 parent would pass on the traight..(a genetic malformation at chromosome 17) … I happened to get it, my brother did not… out of my two daughters, my oldest escaped, my youngest did not.
Although she was diagnosed at birth, her mother and I never gave the condition much thot.. it simply was not considered much of a serious health risk..until a tumor made its appearance on my brainstem.
Until now, she was scheduled for mri’s every two years or so to be sure that there were no tumors starting in her head ..you see the lining between her brain and skull are a favorite place of nf-1 tumors to sprout.
Although my new condition doesn’t change the statistics for her developing any new condition, it certainly got the attention of her mother and I. As it turns out, that during periods of hormonal flux, (puberty, pregnancy, and menopause) there is an increased risk of tumor development so my daughters’ pediatric neurologist recommends mri’s every year instead of every two. (the idea that my daughter each has our own neurologist is unsettling)

January 08 - What the hell two for one.. we’ll have Mariah get an mri at UCSF while dads getting’ his… why make two trips? Hmmm...
Dads starting his radiation treatment because brainstem tumors are inoperable…
No surgery.. just radiation..
Chemo is an option.. sort of.. maybe later…more on that later…

So Mariah gets her freekin mri… and it’s all good. Right? Uhm, no.
Damn mri reveals a few things we find curious.. not specifically alarming.. but surely curious. Things that weren’t on previous MRI’s.
Sonofabitch.

MRI shows two “anomalies”…one on the optic nerve behind her left eye, the other in the optic nerve channel behind her right eye.
Doc says now we look at mri’s every six months,. (More frequent = elevated interest)
Sonofabitch.

My mother was sick with respitory disease for many years. Rarely did she ever complain. I regret deeply that I did not do more for her. We spent many holidays in hospitals…At the time I was oblivious to my insensitivity - what a fool I was…so young.

The thought of my child facing similar difficulties scares me.I am happy that she is getting the attention the situation needs in the appropriate time.
Had my tumor been discovered years ago, I would be blogging a different blog tonight.

The thot of her facing a shred of the nightmare I have terrifies me.

I have a headache now.

home again...

2008-11-26T11:26:00.000-08:00

i dont know who was told and who wasnt...

i went in the hospital sunday but i am home now.

i have been making meds changes, and from what i know about my condition and the meds i am prescribed it is likely the reduction in steriods that is responsible for my symptoms.

a return to a more rigorous dose of 'roids and more antibiotics should put me back on my feet...
i still feel like hell, but at least i will be home for T-day.

i am looking forward to the dinner my daughter is planning, she is already very good in the kitchen..both culinarily and creatively.

i feel another blog rustling around in my head..i expect it will show itself soon...

Happy Thanksgiving to everyone...May your day be spent with friends and family, good food and promising tomorrows...

B-ball, new job, holidays...

2008-11-16T10:10:00.001-08:00

Mariah continues to play basketball with the school team...
So many of the other kids tower over her, yet she still goes out there...
I am amazed... I never even attempted any such thing at her age, I was always to chicken..

Miranda got herself a job...she is working at a local entertainment play-place, supervising kids at play. She's a natural..always been very good with kids...
Crap...She's driving, employed, 18 yr. old boyfriend...geez...really starting to feel old.

The holidays are here...Miranda wants to make Thanksgiving dinner here with her Mom...
She's visiting from Vegas for a few weeks...The girls need some time with their Mom, but her presence always makes me uncomfortable...uneasy. Far to many wild accusations from her in the past.

Mariah's MRI is in about a week... following up on an anomaly on the optic nerve behind her left eye that didn't present on the previous MRI.
It could easily be nothing, or a simple benign tumor from the NF-1. However, with my current condition I get a little nervous worrying that it could develop into something like what I am dealing with. It terrifies me to think of her having to deal with something like this.

Ick.

More later.....
I'm too tired to sit here...
My back hurts....

I am alive again ??

2008-10-29T21:47:00.000-07:00

well..
after weeks of unrelenting pain, something finally broke.
whatever had a hold of me let go.

i spent nearly three weeks in constant crushing pain...not like waves on the shoreline pounding me.. but more like a constant waterfall with me at the bottom chest deep in the waters still catching air but unable to get away from the constant barrage pummeling my shoulders

i try not to write (blog) when i get like that...i've done it before, then, when i go back and read it later, i sound REALLY REALLY crazy. ah well.

so the other day i resigned myself to checking in the damned hospital cuz they got better drugs and i couldn't take it anymore.
well.. it got late and i got tired i said to myself screw it.. i'll go tomorrow...

well.. being the procrastinator that i am, stalled again today.

after coming home from taking my daughter to school something just switched.
my pain level went from the 7 or 8 that it had been for weeks to a 1 ...(from the 1-10 pain scale)
even now as i write this. i am at freaking pain scale of 1 and i can see out of both eyes with little or no blurring..one image. (not the double vision crap that has plagued me for months)

what the hell?
i haven't made any significant meds changes... i haven't done anything fantastic - -nothing.
don't get me wrong i like this development - - i just wish i knew what the hell causes the changes.

what triggers the periods of insane suffering ?? what causes the change that allows me to live again?

a week ago i would have walked in front a bus to stop the pain (if this hick town had any freekin buses!)

as i write this i am no more uncomfortable than had i been on a decent hike along the river.

i miss being able to do simple things with my kids..with my family and friends.

i am told that my tumor could continue to react to the radiation treatment for a period of months, so i imagine that its possible things could get better and i could enjoy a period of ability much like what i am experiencing now. that would be nice.

a bbq with my brothers family and my kids at the park? a day trip in the foothills? THAT would be awesome.

hopefully this blog will reassure you that i haven't gone off the deep end...or at least if i have, i have dog-paddled my way back to blog for you.

tonight, Mariah and i made peanut butter fudge, and we are waiting for it to set.
wonderful pleasures can still be accomplished..even if i hafta steal them from this monster in the fleeting pockets of relief from the insanity.

i hope all is well with you.

too soon..

2008-10-28T07:05:00.000-07:00

headed to the hospital..

too many days...

i give up..
i have spent too many days in pain..

i've tried.. i cant do it any more...all the morphine and norco i've shoveled into my face have failed to effectively relieve the constant barrage these last weeks.

i didnt think i would come to this point this soon.

may be available txt...

cliff

just in time....

2008-10-16T14:58:00.000-07:00

"nudge, nudge, you oughtta blog dummy…"

"yeah, i know.. been boring here…’sides, i hate it when it reads like a staff report, i’m ok… kids r ok…money is tight, still sick, still hurt…same ol’ same ol’… "
"then again…there is something I was thinking about the other day…"

Every four years or so we are prompted by a presidential election to go out and vote for some guy to lead our nation
He’ll do this by making choices and decisions that we will ultimately examine and dissect would never really want to ourselves make but freely gripe about how we would have made different choices if had been our choice to make…
Hindsight is so much easier when its someone else’s decision you are hind-sighting. We bitch and moan and scream, we vote the party line, but do we resolve important issues this way? Psh.

All too often we have been to freekin lazy to get off our asses and do anything about the issues that concern us and we try to fix it with new laws or legislation when it comes time to vote…

This time, everyone thot we would be bitching about the war in iraq… and we are.. but the economy and health care have pushed “the war” into the back seat..

(As you can imagine health care is an important issue for me…)
As far as the economy is concerned…uhm…

I get tired of hearing our politicians complain, blame and flame about whose fault it is.. how the other guys fix isn’t a fix etc - blah blah blah..
Hey guys, I want to hear what YOU are going to do to fix it.. HOW it got broken is important only in the context of that we don’t keep breaking it…

Half a brain knows that there is plenty of blame to go around from buyers to sellers to real estate agents to loan agents to banks and CEO’s to anyone that has an IRA, 401k or owns stock or a retirement acct. Everyone wants there portfolio to expand no matter the cost…
I know that such a perspective might be considered extreme…but really, think about it.. The “trickle down” make my money make money attitude…when it expands from your “portfolio” and all that drives your investors decisions is to squeeze that last penny into your pocket, and some board gives them the o.k. to make such risky decisions, you wind up with what we have in today’s economic market.. affecting national, - international markets.
Nobody was blaming when the market was “appreciating”.

Over the years I have had very important jobs dissolve due to the companies I work(ed) for dissolve, break up into other locations stateside or south of the border or north of the border or over seas or whatever…
It boils down to greed. Straight bullshit slimy ass greed.
“Stock holders” want to see the bottom line squeezed as hard as possible…. Make their money no matter what.. it’s been going on for decades.. the teetering global economic markets now suffer from this pinnacle of slithering greediness…

It seems nobody paid any attention when worldcom and enron and all those freaks gouged us…
Collectively, we barely even glanced….do they have your attention now? Will this be just another bump in the road??
Dumb.. just dumb.

This is the cost of blind greed.
This is the price of indolence…

2008-09-09T09:37:00.000-07:00

Hmmm

Blogging…

A diary..public journal?
Soap box?

A different thing for different people?

Mine is an outlet…

I don’t know really why its “published”. (why its online for anyone to see)
Mostly at the suggestion of my brother, whose writings I have always been jealous.
He is SOO much more articulate than I.

I do find it therapeutic to express myself on paper and process thru the thots rolling around in my head. When I go back and re-read some of my stuff… (after suffering thru my fat fingered typos and repetitive or missing word/thot content attributed to brain malfunction) it sounds different than it did in my head.

Lately, a lot of my posts have been negative and depressing. Yukky whiney stuff.
Why such suffering? What point or purpose for such constant pain? Seems all I write.

Yeah.. well I dunno.

What I do know.. is that I am learning patience in ways that I never imagined before.
I am forced to learn to handle things differently. The frustration that I felt before.. trying to effect control over things around me...expecting outcomes that suited me…and when results weren’t what I wanted…frustration morphed into agitation morphed into anger into rage at whatever…at the world. Some sense of injustice roared thru my veins in hulk-ian (?) fashion and everyone around me was made aware of my disdain.

I have had this poor reaction to my environment for years...decades likely.
It has driven a wedge between myself and my family always…I was just to damned ignorant to see it.. I was only recently made aware of its effects on those so close to me.

For me… from my perspective.. I was simply venting. When I was done, I was done. For those around me I was seen as bitter, angry - even mean at times. Surely surly and corrosive.

I do believe that some measure of my discontent was/is driven by my sense of helplessness. A belief that I have little control over my environment. At least less control than I desire. At the risk of expressing some “victim” posture I would have to say that for many years I was told that I did not. That I was unable to do many things. Many ideas and projects - hopes dreams.. were quashed. I was told relentlessly (you cant..) (”you don’t have enough lead in your pencil”).. I was not encouraged to try new things in ways that I should have been. I was rarely allowed to express my opinions about stuff. There was a very real sense of being restrained…that feeling carried from adolescence haunts me still.
I don’t think my ol’man ever met Yoda.

It seems it takes a terminal medical condition for me to learn the patience I should have been exercising all along.
To show my friends and family the respect they deserve.

I’ve been an ass.
But I am learning~.

click...

2008-08-28T21:44:00.000-07:00

Click, View...Text Size -> * Larger

Better.

mirror, mirror

2008-08-27T05:03:00.001-07:00

Who am I ?

Today...

2008-08-23T01:50:00.000-07:00

I am tired.
Again.

Today sucked.
My leg hurts.

I can't close the fingers on my left hand.
I got nothing done today.

This is getting old.

I dont know what to do.

results

2008-08-09T18:22:00.000-07:00

new MRI shows new stuff around the tumor.

Unable to tell if it is new growth or post radition tumor response to the treatment.
Doc wants a new MRI in 30 days.
Trip to SF exhausted me. I've slept all day. Been sleeping for for nearly 24 hrs now.
My weight is up to 270 lbs.
Doc wants an MRI that can only be done in a closed MRI machine so I don't know if I will fit in the damn thing.

Doc continues to reassure me of the diagnosis, and that being an NF-1 carrier, at this point, is a good thing. It seems that the nf-1 tends to retard the growth of this type of tumor... slows things down a bit. Now if I can control symptoms enough to make it worth getting up in the morning I will be alright. I hurt too much.

Road Trip...

2008-08-08T07:19:00.000-07:00

Headed for UCSF today.

My friend is driving me of course.

I have an MRI and a doc app't after.
My entire day will be consumed with this venture.

I look forward to being able to post something positive someday.
It doesn't look likely anytime soon. I hate that.
I am sure people are tired of hearing me. I am tired of hearing me.

What's on the other side of ones breaking point?

I am...

2008-07-31T19:57:00.000-07:00

Very tired...

Losing battles at every turn...

In increasing Pain...

Losing the desire to fight anymore...

My head hurts.

Something needs change.

6:00 p.m. Back from UCSF...

2008-07-28T18:13:00.000-07:00

Its 6:00 oclock...

We made it home from UCSF...
Mariah and I saw each of our respective neurologists...
I can't tell tell you how special that is.. we each are seeing freekin' brain doctors for active probs...

Also, when I blog, or email... I try and proof read what I have written before I click "send", to clean up typos etc...
In the previous sentence, there is an extra "tell"... THAT isnt a typo.. itsa gdamn glitch in the processes in my brain that are breaking down. Just thought I would leave it that one so y'all get an idea of whats happening in my head. (stuttering?) shit.

Anyway....
Not much good news for either Mariah or me...
My doc decided to go ahead and schedule a new MRI soon..next few weeks instead of September due to continuing symptoms...

Mariah has to go back for another MRI in six months for a new anomoly behind her left eye that is of concern.. neuro-oncologist is supposed to contact us next week for more...

Her EEG came out fine ... Some normal "abnormal" spikes appeared in the test.
This means that the "spikes" aren't normal, but not necessarily abnormal for an NF-1 carrier.

I'm tired.
I can't remember anything else.

I am gonna rest for a bit and watch Stargate SG-1.

I'ma Sci-Fi dork.. I know.

My Lovely Lady French Nuerologist just called...

2008-07-24T18:12:00.000-07:00

She reviewed my new MRI and is happy with the results...happy with the reduction and is setting a new MRI and office visit for September...(3 month)

We disussed the double vision/blurred vision symptoms and left side pain issues.
Some of the pain meds have vision related side affects, so she recommended follow-up with PCP and pain doc.

Seems I will be wading through symptoms and docs to resolve them one at a time...
I gotta do something to improve the quality of life factor... soon.

I need to go think about stuff...

Mariah EEG and MRI...

2008-07-23T20:53:00.001-07:00

The trip to UCSF for Mariah went well Tuesday.

If you read this blog you know that my brain stem tumor is caused by NF-1.

Mariah my youngest daughter is also a carrier.

This means we have to take her to get brain mri’s every year or two.. to be sure there aren’t any developments like the one in my head now…

This year we happen to be getting a sleep-deprived EEG as well for another issue, but its cool.. and it gives us a great point of reference when treating or dealing with the nf-1 in the future

Here she is getting a buncha electrodes connected to her head for an sleep deprived EEG…
Afterwards, we will head around the corner for the MRI…

OWE! Pulling hair!!

I'm so pretty ~!~!

Follow-up with her neurologist is Monday...

I will post with results then...

still and again...

2008-07-23T20:44:00.000-07:00

So... My “weeping edema”, “pitting edema” probs are back

So much so that the swelling is to the point the skin on my legs is shiny…glassy even.
Stretched to the point of feeling like it will tear at any moment….
Heat builds in my legs from the stretching of tissues. It hurts.

Weeping leg edema means a back up of pressure within the small veins and capillaries that drain a specific region of the body. It was first described when there was obstruction to the venous and capillary blood vessels draining the lower extremeties. When the pressure gets high enough, the thin walls of the small veins and capillaries become leaky allowing the water portion of the blood to leak out. This fluid fills all the spaces outside the blood vessels and eventually ‘weeps` out on to the skin.

It also leads to the build up of water on my ticker…left side heart enlargement…
The weeping also leaves concerns that there are solids left behind when the water portion of the blood is forced out…solids that can turn into clots.. in my legs or heart or lungs..
THAT could be dangerous.
I’m a mess.

Yes, I am taking my damn water pills.

just a note...

2008-07-13T21:47:00.000-07:00

I been hurtin'for days and breathing is becoming more labored as time passes.

Fuck.

Doc appt in the morning.

finally...

2008-07-13T19:58:00.000-07:00

OK here’s the deal…

Some days I wake early….(4:00 a.m.early - ick)
Some days I sleep until lunch time or later.

But almost always.. Either way my first thots are of how of to avoid or control the pain that is sure to plaque my entire day…
Getting my fix. Planning my day..
Will I be able to control my pain or double vision enough to drive?

Bathing, will likely take an hour or two…

If the day is good one, I will be able to continue with a “normal” day.

You all know what that is…where one proceeds with work or errands…taking a kid to school, shopping for groceries or paying bills.
If the day isn’t so good, I might need to rest until lunch or so…sometimes a shower is simply exhausting.

With very careful drug management I seem to be able to create a few hours each day that are OK…other than that, I am miserable.
My stoopid brain tumor is stealing from me not only years from the end of what was my expected lifespan, but hours of everyday along the way.

Managing, manipulating, and planning…each day around a walnut sized tumor embedded in my brainstem.

All the long term goals and plans that I ever had are trashed…
I had become complacent anyway…all the cliché “quality time” that I should have been spending with my kids and family… had all drifted to the wayside…assuming there would always be time. I had become too comfortable being bitter and cynical about who to blame for everything wrong in my life. The fact is, I was to blame for enough of it that I really shouldn't have been looking around pointing fingers at anyone. It was a waste of time anyway, wouldn’t change anything.

Now my perception of time and space are different. There is a psychosis that occurs when a person deals with pain for an extended period of time. Your goal for the day, everyday, becomes getting past this pain…
I am learning terms like “baseline pain” and “breakthrough pain”…”incident pain”.
Before, I just thought pain was pain.

I am learning that some of the chemo drugs have a tendency to lead to leukemia. I found today that one of the primary drugs I am taking for pain may be causing my vision problems. The freekin’ steroid that has caused all my weight gain jacks with my blood sugar and blood pressure. What fun huh?

After a week of having my blood pressure down around 80/50… It’s now been 150/100 all damn day today and yesterday. I feel like shit.

With that, I am off…

I have tried to finish this damn writing for about two weeks, and after a few reviews, fixing damn typos more than once…I am finally going to just post it and hope I didn’t miss anything to horrendous. I think it tells what I wanted to say…

Bleh..

2008-07-05T07:52:00.000-07:00

For the moment, I am feeling better.
Hopefully a reprieve from the last several days that have been plagued with fatigue and misery.
I have slept virtually non-stop since early in the week and have found moving or eating...anything...both difficult and painful.

I missed the aerial fireworks show last night and am really bummed about that.

My kids are home from Summer break tho, and that's cool.. I am glad to have them back here, although I wish they left their sibling bickering on the damn train that brought them. ;)

It is Saturday. the sun is up..I can move...I can see...(only one image to choose from).
Today is starting off good. Today will be comparatively productive if it stays this way.

Sweet~!

2008-07-01T11:37:00.000-07:00

After an entire day of being pissed off at the world...
My stellar daughters came home from summer from their moms.. with my b'day /fathers day gift of this !!
Totally took away my pissies (despite the excruciating pain developing in my head and back...)

8.0 Megapixels for stunning prints as large as 16 x 20 inches.
3x Optical Zoom-NIKKOR Glass Lens gets you close to the action.

Anti-Shake Mode minimizes the effect of camera shake.
Huge, Bright High Resolution 3.0-inch LCD makes it easy to view and share pictures.

Adjusts up to ISO 1600 to keep shooting even in lower light.
Nikon In-Camera Innovations:In-Camera Red-Eye Fix(TM)--automatically fixes most instances of red-eye in the camera.

You may never see red-eye again!Face-Priority AF--Nikon's face-finding technology that automatically focuses on faces.D-Lighting--rescues dark or backlit images by improving brightness and detail where needed.
Color Navy Blue

The pic is RED but my camera is BLUE..

My very first digital camera~!!! WOOHOO!

Now all I have to do is learn how to make it do everything it can do...

stills, movies with sound, a freekin 3 inch screen...awesome...

In other news, my wonderful optical logitech trackman wheel mouse that so adore and have so for years fell ill several days ago...we made use of a simple two button shitbird mechanical mouse for many days as i futzed with the trackman. I did get it up and running...I was so happy!

Today it died all together..and there aint no coming back this time. Thursday I will need to go buy another one. Does anyone else hear bagpipes?

just this...

2008-06-24T16:15:00.000-07:00

a few posts are rumbling around in my head, not quite ready for the world...

I will say this....popsicles are good.

It's hot out, and I can't eat alot of ice cream, but popsicles are o.k.

So, I am eating popsicles. bunches sometimes.

They are sweet and cold and yummy. As of late, I don't get much else in the way of little treasures, so I am eating popsicles like crazy.
Red ones, Orange ones, Purple ones.

YAY for popsicles ~!~!~!

MRI stuff...

2008-06-18T20:02:00.000-07:00

Here some stuff from my mri reports...
I am not sure what to get from the sum of them both...

First MRI 1 February 08

There is a 2.7 x 2.8 x 3.5-cm mass in the medulla with T2 hyperintensity and T1 hypointensity.

FINDINGS:
There is a 2.7 x 2.8 x 3.5-cm mass in the medulla with T2 hyperintensity and T1 hypointensity. With contrast administration, there is nodular enhancement involving the inferior portion of the mass.

Second MRI 2 May 08

The non-enhancing cystic component of the mass measures 1.6 cm in
anterior-posterior dimension, 1.7 cm in transverse dimension and 2.2 cm in cephalocaudal dimension.

CONCLUSION:
There appears to be a slight decrease in size of the overall brainstem mass in comparison to the report of the prior study and more significantly the enhancing component also has decreased in size as well, resulting in far less mass effect at the foramen magnum.

Sooo… the measurements look pretty good sounds like a good reduction in size…

But the doc says “slight decrease in size of the overall brainstem mass” followed by “resulting in far less mass effect at the foramen magnum”.

Trying to understand “far less mass effect” and “slight decrease in size” compared to the way the numbers all line up. (look at the numbers – do the math - )

So, now I have the new report.
I was all excited…but really I still need the doc to tell me what it all really means.
So I am still just waiting.
Frustrated.
Tired.
Still hurt alot sometimes.
Thankful for morphine.

More later after I talk to the doc…
Wish me luck~!

A good day...

2008-06-16T09:29:00.000-07:00

OK...
Today, so far is a good day...
I overslept like crazy, but that isn't necessrily bad thing.
I am not in any active pain at the moment but I have only been awake about an hour.
I loaded up on drugs straight away...as I sometimes forget and then things can be not pretty.

After many very unpleasant days in a row, yesterday was pretty good.. little or no pain, and what I did have was managed well...and today is looking good, so say a little prayer for a continued pattern of blessed normalness.

I am gonna hit the shower and head out on a couple of errands that I have been procrastinating on for a bit.

Pain is...

2008-06-12T19:17:00.000-07:00

Pain has been manageable...

Been sleeping way more than normal...
From the adjustments in meds maybe? dunno...
Still carrying the weight preumably gained from steriods.
Double-vision is back enough to make me not wanna drive.
Back and neck are stiff, hard to move.. my left arm gets hot and cold...
Makes me wonder what good radiation did for me...

Waiting to hear what docs have to say about new MRI...
Wondering if chemo is an option and if it will do me any good.
This is not how things are supposed to be.

This damn thing has been robbing me of stuff for awhile, noone ever knew what was up before...Subtle things, over time.. years even...
The symptoms are more pronounced now...not so sublte...Now I am really hurtin'...

OK.. damn left arm and leg are numb. hard to type...back hurts from sitting here...shit.

gonna go put my feet up. maybe come back later.

see you soon~!

Summer begins...

2008-06-08T11:50:00.000-07:00

Sooo…the girls are off to Vegas for a few weeks…
Amtrak it is.. freekin’ airfare nearly doubled.. from $120 a pop round trip to just under $400 for the two of them…freekin price of gas…

It’s always weird when they aren’t here…to quiet…
We always need the break from each other buy the time summer gets here…

I think about being alone in the house right now.. I am ok.. but what if something happens? “I’ve fallen and can’t get up” commercial floats thru my mind…

I’ve scheduled the next MRI to check on the progress of the tumor in my head, but otherwise symptoms continue to make life very close to miserable.
I surely hope that this isn’t it… if this is the quality of life I am to expect consistently then we will have to make some adjustments for sure.

grumble.

2008-05-30T15:11:00.000-07:00

it's so tiring to do ANYTHING.
takes to long.

today started out with another bad episode of severe pain.
struggled until just now, (2:00P.M.) to get anything under control enough to resemble normalness...

THIS is why my days are unproductive and I am tired.

Geez...

2008-05-27T11:50:00.000-07:00

Has anyone seen the "Cash for Gold" TV commercial? website?
A place that will give you cash for jewelry thru the mail, no questions.
Wow. How easy are we gonna make it for people?

Thieves and burglars..mail in your goodies..we'll process it for you and melt it down... no evidence trail.. thank you. Bye now.

http://www.cash4gold.com/?partnerid=Google-Tandem&gclid=CKGxlfyrx5MCFRZZiAodnWWsCA

geez.

ouch...

2008-05-25T18:13:00.000-07:00

Sunday night...I hurt...Again. Still. Something. Crap.
I thot I had a reprieve from this.

Last blog entry says it was Wednesday when I came home from the last hospital stay.

Days kinda blur into each other. too much drama in my life. too much pain.
Wanna blog about other stuff.. maybe something other people actually might find interest in.

Sometimes that is challenging. Most of my time now is spent dealing with my illness at one level or another. Managing the condition, side effects, medication, pain, the stack of ($100K and rising)bills ~(and ignoring their calls), etc. Kinda hard to find time to bitch about other shit. Although my ex-wife is sure making a healthy attempt at making the top of the list.

Would be fun to soapbox about politics, economy, the price of gas, health care (the distinct lack thereof), oh yeah, that pesky war.
But by the time I get out of bed, bathe, rest from bathing, dress muhself, it's time for lunch.

Left message with guys at UCSF on Friday...maybe Tuesday they will call about scheduling an MRI. I really wanna find out whats going on in my head. I hurt like hell again, just want to make progress. Wanna know WTF. My condition is terminal...That much I know. What is unknown is how long its going to take to kill me, and how much of hassle it's going to be along the way. Dying doesn't bother me so much...ain't really afraid of that part. Being in pain, or being a drain on my family doing it bothers me. I dont want to lay around taking forever to kick off and I don't them to have to watch me lay around taking forever to kick off.
Fuck THAT.

So now I need to figure living wills and advanced directives and crap.
Geez.

I don't own anything of value, so that part is easy.
Whose gonna argue over when to pull the plug? Hmm. Hmmm.
Maybe argue over who gets to pull it?

My brother drove down for a visit Thursday.. it was nice. I wish I had been in better condition..mentally and phyiscally. Conversation was good, but it was hard for me to stay focused. Moving.. to walk, or bring the damn fork to my mouth at the restaraunt was hard...achey. He brought me fresh eggs from his home, and I will thoroughly enjoy cooking with them. I think of myself as a "foodie", but only in the context that I like to play in the kitchen, pretend I can cook, not in the context that I have any freeking idea that I know what I know am doing.

Gotta run...
Kids are hungry.. AGAIN~!

Home again...

2008-05-21T22:11:00.000-07:00

From a few days in the hospital again...

Finally got the docs talking to one another...sheesh.
Changed a few meds.. added others. 11 (yes, eleven) prescribed meds now.

Wounds from "pitting edema" were significant enough that they came in and took pictures of my damn legs. ick.
Also got to do some nuclear xray tests were they had me breathe some radioactive breathing treatment junk and took pictures of my lungs.
Then they injected me with more radioactive contrast media and took more pics of my lungs (and heart?).

Gotta schedule another MRI at UC San Francisco to see how the tumor has responded to the radiation treatment.

Some symptoms have returned, sensations (pressure, pain etc.) in my head an neck that I thot I was done with. Bummer. Not feeling good about this at all.

A doc appt last week found that I am up to 254 lbs. Thats about a 45 lb. gain in 3 1/2 months. I feel awful.

It's late now, and I am tired and I hurt. I am going to bed.
Actually, its to the reclining couch because laying flat is very uncomfortable.

More later...

Pain...

2008-05-15T04:33:00.000-07:00

Woke me over an hour ago...
Norco + Morphine...still fuk'd.

Won't stop.

SonofaBitch.

4:30 A.M.

Has anyone seen...

2008-05-14T03:27:00.000-07:00

My scotch?

...

blog...

2008-05-11T01:06:00.000-07:00

its 1:00 am...
i cant sleep again....

i have been drifting in and out for several hours...NOW i am awake.
today has been especially rough... very uncomfortable...pain has been moderate, but the side effects from the meds have been awful. i seem to swell larger and larger by the hour...its even getting harder to breathe for crying out loud.

my damn blog sounds like one big complaint...
always bitchin' about drugs or pain or something...sheesh.

i know my life is out there..where I left it... (it left me?) i just drifted off little... a stumbly, semi-parallel line wandering almost within reach of the path i am supposed to be on... still moving in the same direction... if i can just get back there... it seems so close...
i wonder if i will get back there...or what path i will land ultimately land on...

gdamn vision probs today...THAT part worries me.
sitting here writing this i have to work to read the screen...bummer huh?
it means the tumor is still putting pressure on my brainstem enough to interefere with normal communications. it will also affect breathing and heart function... seems vision is the first to "go". will the radiation treatment ultimately be enough to resolve the issue? seems not if i am still squinting to see the fucking screen. betchya that means chemo. probly one week a month for a year. at least i know where i will be.

plans to do things with family.. my brother, my kids.. are seriously affected by the lingering symptoms.
i hate waiting...next appt with ONE of my neurologists is this week...
did i mention i hate waiting? not knowing WTF i am doing is a serious drag.

i have been talking with my brother quite a bit more lately...that part is cool.
my eldest daughter and i are talking better...she's 15, so it ain't easy for either of us to deal with the other -

enuf rantambling for one morning/night for ya?
at least its not all nagging around in my head anymore...

starting at 9...

2008-05-10T07:49:00.000-07:00

Today isnt starting very well.
9 isnt a good number.

1, 2, 3, 4, 5, 6, 7, I think thats everything... < drink >

laying back.
now just wait.

closing my eyes...thinking about a more friendly 3 or 4.
sshhhhh... ssshhh...please.

oops.

2008-05-09T18:09:00.000-07:00

a day on the town...

went to walmart...
visited a friend...
stopped at RAT SHACK...< radio shack >

got gas. wow. THAT was expensive.

forgot my gdamn meds. over shot by three hours.
pain now. gonna be bitchy as hell till this shit kiks in.

stay oughtta my way. i promise i'll do my best to make sure i dont do it again.

Thank you.

< fuck >

Grabbin' Gears...

2008-05-07T09:17:00.000-07:00

and clutch... and shift...
There’s second gear.... were moving down the road now...I feel better.
I love it when the drugs kick in.

At this moment, Pain is now at an acceptable level.
You know how when you go to the doc or ER or whatever? They always ask you about your pain level? They give you the happy face 1 thru 10 chart and tell ya to point to where your pain is?
Well,,, I often wake to a 7 or 8...thats normal now. It makes me bitchy.
I can usually get it under control in a few hours…

If I can keep my happy face at a 3 or 4 during the day, I'm cool. No sweat.

When we get to the 8, 9, 10, 12, (usually daily) and I can't get it down it becomes a prob.
It changes my personality...I've seen it before with other people...The psychosis that happens with that kind of pain...Managing chronic pain.
I understood it, but only from an outsiders view...theoretically.
I have a new appreciation for it now.

I’m also learning about pharmaceuticals...The drugs they are giving me…How they interact with each other. How and what I eat affects the way my body metabolizes them.
Kinda becomes a science.
What happened to just poppin’ pills?

Anyhow..pain level is at a cool breezy ZERO now. I can see well.. no double-vision…
I might go for a drive. Gonna try walking to the corner first.

I think most people don’t quite fully grasp the impact not being to drive can impact your life. I have been to the point in that I could not walk… my writing looked like 1st grade crayon block letters and shaky at that. Scary and frustrating.

So when I can walk…write legibly, stand at the stove long enough to prepare a meal, it’s nice. Simple shit I might have bitched about having to do before.
Maybe not so much now?

Cliff

OWE.

2008-05-07T08:19:00.000-07:00

Insane Pain Today.

Morpine, NORCO...Tramadol. Nuerontin. Waiting for it all to metabolize.
Until then, I won't be pleasant.

Maybe not after.

FCK.

2:00 A.M. Monday morn...

2008-05-05T02:11:00.001-07:00

And I can move...

Another active day today...

Went to The Relay for Life fundraiser thing in Manteca yesterday...some extended family invited some time ago, and I tentatively accepted the invite to participate...
The "tentative" part is contingent upon my ability at any given time to... do anything.

So when the time came, I was feeling well enough to walk, talk...etc, so off I went.

They had acquired a wheel chair, and my niece pushed me around the the track while.
It was fun, I got out of the house, met new people and was treated to hot dogs w/mustard (I love dogs 'n mustard) and a coupla energy drinks.

Today started out rough and didn't get any better until about 20 minutes ago.
My head hurts in ways that it has not hurt before. Much like a hangover headache, frontal lobe region...constant. Pushing to the back of my head and reaching for my ears.
It lingers still, just less intense.

Sunday I went to church with friends that have been inviting me for awhile, and again, getting out of the house is good for me, physically and emotionally. The walls get boring.
I unexpectedly met other friends thereas well, one of which is also dealing with a long term pain management issue. We chatted about drugs a bit, I am a newbie, and they have perspective that I do not.

A little later I made a trip to the grocery store... easy household chore...right?
Well... I ain't driving lately so when I can get a chauffeur I gotta get it done all at once.
Anyway... long day. Made it home. Put away perishables, than laid on the couch, drifting in and out of sleep until writing this.
Two days low level activity..tiring.

Back to the headache...
Its new. I dont like new. My UCSF docs have been down playing my condition. "No Prob..." "You gonna be around for years... "
Hmmm.

February...March...April. 6 weeks radiation - done.
Double vision ?, comes 'n goes. Balance ? comes 'n goes.
Pain...

I kinda expected to be making better progress by now. Looking back, I guess its only been 90 days or so since initial diagnosis... but the docs said no sweat...?
New headache? crap. I dont like new symptoms. I dont like not knowing what they mean.

I wanted to avoid chemo. new symptoms = more treatment? dunno. more treatment = chemo? dunno. I'm callin' the doc in the morning. ech.

I'm rambling in the wee hours of the morning,,,I'm doing here 'cuz everyone is asleep.

Look...The sunrise...

...

2008-04-29T17:57:00.000-07:00

Court went well today...

Lines were drawn and dates set for future weighty decisions...
An expectedly rocky road raked to a rough gravel...this will be comfortably drivable.
I am content.

Too much time on the road tho...I hurt now, and likely will the rest of today and tomorrow for sure. Shit.

...

I graduate tomorrow.
Treatment #30. Then an MRI to check on the thing in my head that ain't 'sposed to be there.
Dunno after that.
Makes me tired. Tired of treatment.. tired thinking.

...

Gonna lay down now with the Opiate Gods... Come drift with me?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Humm..

2008-04-26T13:27:00.000-07:00

Bummer....

Today, seems to be an extension of yesterday, plus a little more pain.
I hurt a little more, and am tired. Crap.

Gonna take it easy for a bit....I have a big weeek ahead of me and I need to have myself together...
Other than that, the adoslescent females here are trying to kill each other off trading bickering little nerve frazzling barbs over nothingness. (is that even english?) Anyway...

The sun is out, the weather is good and I am going to go out and enjoy it in a while...

I hope others do too...