Silver Bells..

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...

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...

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...

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 ??

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..

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....

"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…

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...

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

Better.

mirror, mirror

Who am I ?

Today...

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

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...

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...

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...

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...

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...

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...

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...

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

Fuck.

Doc appt in the morning.

finally...

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..

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~!

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...

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...

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...

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...

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...

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.

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...

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...

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...

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...

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

Won't stop.


SonofaBitch.


4:30 A.M.

Has anyone seen...

My scotch?


...

blog...

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...

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.

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...

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.

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...

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...

...

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..

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...

OK...

Several very good days in a row...
Have stalled out...

I seem to have over done it a bit and angered my left hammie.
I am icing and sucking on NORCO.

Other symptoms are all ok tho...
No other systemic pain or balance/vision probs so I think I am good.


Gonna try driving soon...


Did I tell you I lost five lbs this week?

Ugh....

The morning comes...
Conspicuously creeping into my slumber.

Yesterday was a very long, exhausting experience.
Two very necessary out of town appts simply drained me. They are done now, and I am relieved.. Next week promises even more significant events... I am confident but wary.

All of me is spent.

I feel asleep, I think before ten last night..something that hasn't happened in months.
Something else that hasn't happened in months.. I slept until like 6:00. A.M.
That's HOURS more than I usually sleep at once lately...Most times, I sleep about three or four hours at a time... sometimes I am tired..sometimes the drugs keep me juiced...

Cooked a real dinner last night, from scratch. Haven't done THAT inna while either. It came out awesomely ;) and I am stoked. I love to cook, and although it was tiring, it was also therapeutic.

Next week promises even more significant events...
Players are sublty grinding heals into the soil, surveying the field... the game is stepped up a bit this time 'round. The stakes are high, each step needs be measured, calculated.
I am confident, but wary.

An awful whining voice left our home last night....
A vagabond immature feline pitifully appeared near our patio a few days ago...
My young daughters cheerlfully went out to greet this thing and presto, we own a cat. (grumble grumble...)

It wasnt entirely well and they attempted to nurse it to a better place.
It was washed and fed and smothered...and now needs a home.

The younger daughter freeked when I called the city pound...
When the guy arived to take the thing.. we decided to keep him and try and find him a home oursleves... He was required by law to take pics and info in the event someone actually came looking for this thing, but said we could, keep him, find a home for him, or turn him in to them in no more than 7 days as a stray. After that, he was ours.
A few quick phone calls made by my kid, and she found him a family...
(whew!)

Anyway...


Off to my day...

OK....

Just a quick blurb to tell about me besides the profile...

I'm 39 yrs old... live in central (?) CA, and have two daughters....
They are 11 and 15 yrs old, and they are great.. They do drive me nuts with all the normal things that teenagers drive their parents crazy with... But thats about it.

Not currently working, primarily due to a walnut sized tumor lodged in and on my brainstem near th fourth ventricle. (very, very buried) ...it's location means it ain't operable, but we can radiate and chemo it to shrink it...but thats all...no surgery.
It is believed to be benign, but nothing is sure at this point...

I am currently half-way thru a six-week course of radiation.
The experience with radiation seems to be about normal compared to what other patients and the technicians have described to me.

Some things don't work right all the time... today I feel good, but I have double vision pretty bad and it gives me a damn headache trying to focus... My legs are unstable today and have come out from under me a couple times... The floor rushes to meet my face...but its kind of a slow motion, almost controlled event. So far I haven't hurt myself...

Over all its been an enlightening experience in pain... I have Good drugs, and I am learning how to take them in ways that maximize the benfits they provide.

Now, having said all that...

Posts here may, from time to time, appear odd or ranting...bizzare even.

I'll blame it on drugs or pain or other chemical inducements...
Get out of jail free card?


Surely it isn't one of my own neuroses surfacing from the recesses of my dark grey matter.

So you've started a blog...

What are you gonna do with it??


And the answer is... I have no idea.

Thought I might share thoughts, ideas...stuff in my head..opinions about this or that.


In part because my brother has a blog here...and has own professional site.


One of the problems is...I have rarely felt that my opinions or expressions had much effect on anyone else.. having been taught unmercifully for decades that I was never intelligent enough that anything I said or did had any value... I am uncomfortable expressing in public... and don't have alot of practice at it.. and such expression often comes out in negatively, both in personal and professional environments...

I don't intend it to be..it just does.. I look and sound like a big fat grouch.


Very well...


Let it begin.

Good Morning~!~!

From here... a good morning is waking up... Whats even better is when you wake up NOT in active pain.
When your rested and ready for the day is freekin' great~!

SOOO today is great.

Much to do today.. I am sure that by the end of the day I will be exhausted and drugged to the hilt... is ok tho...


Shoring up some footing for the road ahead... it needs it a bit I think.



I'm down.. but not out.


WHATCHA!

Happy BirthDay!!!

Today My blog is born!

I hope to share rambling thoughts and rants here from time to time...

I am sure posts will be full of typos and curses and blurting diatribe offensive to someone somewhere.


See you soon!


Cliff