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.