Tuesday, January 20, 2009

Decisions - Decisions!!!!!!!

Decisions - Decisions!!!!!!!
Well I am in interesting dilemma! Due to (KEEP AUSTIN WEIRDS) Socialized Health Care System, I have found myself between the proverbial Rock and Hard Place!.
You see, I have this little prescription bottle for my Anti-Seizure medicine that read NO REFILLS. No problem, you say! Just call the Doctor and they will call it in if you really need it. That would be the way it would work in most cases, but in Austin!!! The only tpye of Doctor that will make decision on the Anti-Seizure medicine is a Neurologist! So, ask your Neurologist and they will take care of it! I would, but I have no Neurologist! Why Not? You ask! Because in Austins system that I am, You have to have a Primary Care Doctor refer you to a Neurologist! So, have them refer you to one! And quit boring me with this stuff! Ah! Hear comes the Rub. I have been trying to find a Primary Care Doctor that is accepting New Patients for almost a month now! I went to an appointment last week hoping that I would have success finally! Willing to overlook the fact that English was not the language of choice, I decided to "Grin and Bear It" praying for a solution. While waiting for my turn, a white man came out in the parking lot to talk a "patient" whom he had just seen! Shirt tail half out, "Plumbers Crack" just waiting to get a glimpse of the sunlight. Then basically I hear Mr. Gerirea you can back now!
Talk about mixed emotions! What kind of Grade Point Average do you have to maintain in order to get JOB in a place like that. I shouldn't be so hard on him, because basically I think he prescribed the right prescription "Don't come here, I only work 9 - 5 and you never know which (or is witch)doctor you will see". So, on to the next on the list. Just to add a little suspence, I am now less than 2 weeks away from running out of the Anti-Seizure medicine. More calls, more calls, more not accepting new patients, then finally one says they will see me, OK when can I come in for my first visit? April, she says! Look at the calander and do the math! Looks like 'I am up a well known creek, without the the proverbial paddle".
Whoa Nellie!!!!!!!!!!
I think I've had about all of Austin that I can "Live With" pun intended.
Pick up the phone call a past client who works for a Doctor in Kerrville, after telling her in a sentence about the tumor, (Lucky her, she didn't have to endure the long version like you have) She said!!!!!!! Drum Roll Please! We are awaiting our final approval to be a Primary Care Doctor! We not going to Advertise it to the Outside world but, come on in, if it takes another six months for us to get paid, don't worry about it, just get in here now! I'll handle it! I wonder if the Doctor knows! Actuallay I used to do his PC work for him and his practice. (Maybe he did really believe me when I told him it was WindowsXP and not me that erased all of his Patient Records (Just Kidding!))
So, for the Short Part of the story!
I am in the process of getting ready to re-locate back to Kerrville!
It's a little scary because I still have little or no use of my right hand, can't drive and can't do a lot of things because of being over-medicated and being dizzy most of the time. My mother is pretty apprehensive about it. but knows that I am a survivor and is trying to come terms with not being able t watch over "her baby" right now!
Yet, she already has her hands full taking of my Dad, who was in the same hospital in Austin for almost a month because improper monitoring of his medications "Does anyone else see a pattern here?"
Either Way! within a couple of days "KerrPatch Here I Come"
On side note, When I first got of the hospital, I was walking the property here 4 to 6 times per day, as a result (I think) of being improperly monitored on my meds, now 1 trip per day is about all I can do.
I think the best thing that will come with this decision is that is will give me the "Perfect" reason to get Second Opinions on everything that has been done so far!
Thanks again for your indulgence!

Wednesday, January 14, 2009

Steroids and Treatment update

Before I get started with the recommended treatment, I would like to tell a little bit about steroids.
The Dr. started weaning me off the steroids yesterday over the next 2 weeks. My first thought was (Great, now I can change my name back from "Cheetah" after having to eat so many bananas all the time). So, I skipped my 6 pm dose and went about my evening. I got sleepy earlier than normal, so I tried to watch some TV and fell asleep. I awoke at 2 am (2 hours past my next scheduled dose) in a world similar to (1984), gasping for breath and angry and fearful that someone was trying to kill me. Only problem, I was the only one there. I immediately took my next dose and found that they are are fairly fast acting. I woke again at 4 am, still feeling like someone was after me, this time I just started the coffee pot, and decided I may not go to sleep again for the next 2 weeks. I'm making sure that my family has their Taser guns loaded. (Kinda makes you wonder why all the Wrestlers, dress funny and scream and holler at their fans and opponents! If you see me doing that, just shoot me and put me out of my misery.)

Now to the Treatment.
Sometime in the next 2 weeks I should start a 6 Week daily visit to the Tropical Resort of my choosing.
I will go there for cocktails and very customized tanning sessions. (When I signed up online, I thought I was joining ClubMed aargh!!! I really hate SPAM you just never know if that link you click on is a virus or not)
They will first do another enhanced MRI and build special helmet or something that will be used to protect the good parts of the brain and allow the radiation to be more focused on where they see the bad tissue. They did the normal disclaimer in advance as to "No Guarantees" The only guarantee they do have is that I if don't do this now, in a short period of they will have to go back in, cut out more tissue (as it is still growing) and present me with a diminished set of options. So, in a nutshell (no pun intended).
That's what I'll be up to for while. I would invite along for the ride, but I think most of you would prefer waiting for Spring to arrive and getting your tans naturally while doing the yard. But don't be jealous of my early tan.

Soon, I will start a Blog and send you a link for it, that way you won't be pestered by my emails and can just log in to get updates.
I've never Blogged before so it will give me something new to learn.

Thanks Again for all of the comments and prayers that have been expressed, each means than you think.

Hopefully, I will be seeing the Radiologist today to see how good she thinks she can aim at the tumor!
I think I won't be able to actually start any treatments for a couple of weeks due to having too much dye in my system due to mis-scheduling an MRI by the neurosurgeon. That raises an eyebrow! At any rate, hopefully I'll get more info tomorrow!

Above is an image of where the tumor either was or is! I'm not sure at this time!
Later, maybe I can compare!

Thanks for your thoughts and prayers!

Wednesday, December 31, 2008



My holidays were great
I got to spend time with my kids, grandkids, family and the obligatory people that seem to show up every holiday, that no matter who you ask in the family, the answer is always "I'm not really sure that is, maybe they're with so in so!
Even so, the Holidays were good!

For some reason, the Doctors were anxious to keep there paychecks coming in.
I did eye exams, x-rays, MRI's and follow up visits.
No real new information except for a little more info from the oncologist.
The type of Cancer is a BrTRCRK
Astro- sitoma derajat rendah yang lebih jarang. Or at least that's what it sounded like he said!

Actually it is
anaplastic astrocytoma. Now, wasn't that fun adding that word to your vocabulary!
It's classified as stage 3 with 4 being the most aggressive level.
The Dr. said there are no guarantees, (just like my computer work).
But, he is recommending a combination of pill form chem o and laser mapped and guided radiation that should take about 6 weeks to complete.
(I hope they don't use Microsoft, they might have to REBOOT right in the middle of things)
I think that
laser mapped and guided stuff went off pretty well in "Dessert Storm" didn't it?
He said the major side affects were not as serious as traditional
chem o although I could lose hair (which I've always had plenty of) and possibly get my first Tattoo from the Radiation Therapy. (but my hair should cover it up when it grows back)
He did not give me any odds or success ratios he's seen in the past, but said that he may be able to calm the growth for a few years, and if it starts getting more aggressive again, we can try something different.
I really like this Dr. (not enough to go out with him or anything) but he seems to be competent and makes me feel at ease, which helps a great deal
That seems to be pretty much all we talked about.
Anyone want to hire a half-brained computer geek!
Or from what I hear, I could make even more money if I dress the part and show off my scars make a poorly written cardboard sign,
and find a really good street corner........................
Or better yet! Maybe if I buy a Lottery Ticket and choose the monthly payment for life option, maybe the State will increase my odds of winning!
OK! So they didn't succeed at removing all of my poor attempts at humor, but at least I have part of an excuse!

Cut to the Chase , ............Finally they all say!!!!!!!!!!!!

I'm pretty sure that if nothing changes soon, I think I am going to do the treatment this time.
I actually am very up and very optimistic about the future and my decision.
Actually, that still small voice that I have listened to all of my life, spoke to my heart and my mind and said "GO FOR IT!"

"GO FOR IT!" I will!

thanks again for all of your thoughts and prayers, email etc.......
It's always good to hear from you!


Tuesday, December 16, 2008

Another Day!

Sorry for the Macabre on my last post!
I had a good nite and a productive morning getting rid of the concrete they fed me in the hospital!
So, now lets see if I can figure out how do a Blog!
A bit about me, that some of you know about ad some are unaware of.
My parents are Assembly of God Ministers and have been for 61 years.
I have 2 siblings born 4 and 5 years earlier.
The most important thing that I could say about my parents, that despite all of the Love that have giving to me throughout my entire life. These are the only people in this world that I have ever truly trusted. They have always stood on their high moral ground, no matter where I wanted to stand. As a result of their stand, I believe it is teaching me to stand.

Sunday, December 14, 2008

trying to learn learn Again.

From the other side!
I don't know how far I can get with this my self but I have to try to some something to try to use my mind. or what is left of it!
Other than feeling like half of my brain is tied behind my back. I don't feel bad!
Since the last surgery I have lost almost all use of my right hand. I did have use of my thumb and index finger. I am trying to use wherever is left.
It appears that I have lost about 25 to 35 lbs in the last 2 weeks.
I am currently staying at My parents and Uncles house in Driftwood, TX.
I am not very good at talking on the phone for now, So I am reserving that for my immediate family.
E-mails and cards are always appreciated and welcomed.
From what I was told, the oncologist wants to grow more cultures before deciding the final treatment plan!
I am not sure how I am going to choose to handle this!
It may all be a mute point due to the fact that I have no insurance and my bills are already more than I can pay, if I fully recover.
Other than that It's a good day to be alive and kicking!
I was up a good part of the night last night, thinking about computers and how I don't think that I know anyone that has never lost data to a computer!
Then I thought of how simple it will probably be to completely wipe out every line of code and every piece of Data ever stored digitally.
Then I thought of where that would leave the Human Race!
Send someone a Hand Written note for a Change! I bet it will mean more than 10 e-mails.
I think that will do it for today!

Do Good Because Good is a Good is a Good thing to Do!