i am alive...

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

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

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

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

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

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

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

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

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

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

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

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.

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...

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…