Sunday, June 20, 2010

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

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

Friday, June 18, 2010

finality...

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.

Monday, June 14, 2010

another ...

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....

Thursday, June 10, 2010

all right.. that's enough.

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.

Tuesday, June 8, 2010

bleak ?

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..

Saturday, June 5, 2010

Symptoms worsen...

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.

Friday, June 4, 2010

thursday...

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

Wednesday, May 26, 2010

porridge for me...

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.

Tuesday, May 25, 2010

freekin roller coaster....

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..

Monday, May 24, 2010

blast from the past.

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...

Thursday, May 20, 2010

i think i am really sik...

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.

Monday, May 17, 2010

just so you know...

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?

Tuesday, May 11, 2010

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'.

Tuesday, May 4, 2010

If anything can go wrong...

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.

Wednesday, April 28, 2010

conflicting info...

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)

Saturday, April 24, 2010

Just So You Know blog

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?

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.

Wednesday, April 21, 2010

mental health day. . .

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?

Tuesday, April 20, 2010

Thursday, April 15, 2010

update...

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.

Friday, April 2, 2010

i think ima junkie...

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.

Monday, March 29, 2010

hello again...

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

Saturday, March 27, 2010

Who are you -?

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. <----

Saturday, March 20, 2010

ticker tocker...

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.

Friday, March 19, 2010

hey fooker...

"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~!

Tuesday, March 16, 2010

today...

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 ~!!

Saturday, March 13, 2010

Twice Told...

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.

Tuesday, March 9, 2010

Rock On...

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.

Sunday, February 21, 2010

damned clock...

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~!!

Friday, February 19, 2010

surreal...

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?

Tuesday, February 9, 2010

I love thundertorms...

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~!