Yes, I think it falls into the category of God hears all and/or knows our hearts.

Again, my thanks to all for numerous responses and words today. It did help.

Now where's my pocket holster. I hate waiting.

On another positive note, the new medication is supposed to have somewhat less side effects than the Votrient.
This mans I may be able to be more active during the family vacation to Cedar Point.
With the Votrient, it was certain I would not be able to walk around a 300 acre park.

We will see. I think it'd be cool if I felt well enough we could have another roller coaster photo with me looking like I was going to blow lunch.

Deep thoughts here, lbj. Answers are easy in this day and age (i.e.- Google). We are awash in answers. They are everywhere.

But questions. Those are what we should truly seek. And, you are.

Prayer: I pray for knowledge of His will for me, and the power to carry it out. That's as selfish as I can get with prayer. Too many other folks need my prayers. Like you.

If God is real to you, and is as powerful as He is known to be, then the script has already been written. We simply have to put in the work that is placed in front of us every day, and leave the results up to that Power Greater Than Ourselves.

Let us do the praying for you. Likewise, you go and make the best of what you've got, where you're at...today.

Don't ever give up, lbj.

quote:

Originally posted by lbj:
Oh and thanks to everyone for posting a lot of back and forth today.
It really did help.

It is a 2 way street here and I got a lot out of it.
Thanks again.

So have I. Thanks to all.

Dammit. I am sorry to hear this lbj. If there is anything I can do, don't ever hesitate to ask.

LBJ,
You probably don't even realize what you are putting to paper as its taken course over a little bit of time. You keep mentioning the evolution of the thought process and how your thought process has changed. Your writing has put into words the same process we all will go through, and you have been able to do it over time as a rock and with critical thought.

I can't speak for everyone, but its been unbelievably moving. I've read, and have not been able to post. At his point, you've given us perspective that is never put to writing. Whatever time we have, very few leave giving more than they take.

I hope you get your taste back, and I hope you react to the infusion. Every single one of us is different. Just because you ended up on one side of a statistical chart doesn't mean it will be the same for the next treatment. Hope is a pretty useful tool.

Its a fact that doctors don't really have answers, they just narrow down possibilities. I know it first hand. Incredibly, I've been witness to patients proving doctors wrong many times. We all start out as human also. Just some of us forget that fact. Some don't.

LBJ, I have only recently seen your posts, and offer a wish for peace, clarity and meaning as you walk upon this path. I recently went thru my own journey from the "what is this", to diagnosis, treatment, and now recovery.

I will not say that I "know" what you feel or are going through, but I can understand some of the thought processes and motivations as you move along in this journey.

The best that I can offer to you is to stay as focused, positive, and determined as you can. Keep posting your thoughts and keep letting your extended SF family in to share this burden and offer the many shoulders, helping hands, and wry and odd senses of humor.

No matter how this journey finishes, may G-d bless you and your family and keep you all truly in his Grace.

Fry

Thank you for that from both of you.

With forethought, I have deliberately put this out in public. I don't know that what I am doing is super rare, but I don't think it is commonplace either.

I do get a bit carried away at times, but who wouldn't. It's a full plate and there are a lot of moving parts.
It's hard for me to even keep up on everything that goes on in my mind. It's a veritable cornucopia of thoughts, philosophy and whatnot.

I have no doubt that some of my posts are getting a WTF or two or three. However, if one can continue reading, it kind of sorts itself over time and balances out.
I think most of want to make sense out of life and death and our belief system.
Whether that is even possible to get correctly, only time will tell. That said, I expect lose ends and unanswered questions. I am not capable of understanding everything here.
Some of that is simply beyond the power of my brain and some of it is the limitations related to our biological makeup. The questions and answers here will not be perfect.
I just do the best I can.

I like doing what I am doing here. I like writing, I like philosophy, I like to make sense of what I am, who I am, what I do here and what I think about.
I love a good brain rattle.

Retirement is only 2 months away.

Now where's my Hedley pocket holster... dammit!

LBJ, I've been following your progress closely but only posted once because, honestly, I don't know what to say. There's a big part of my makeup that demands that I fix things, even if it's beyond my power.

I can only say that I'm cheering for you and praying that, somehow, things work out.

Para was right about God's will and being willing to fight, I'm absolutely sure of it. Please don't give up the fight.

To cheer you a bit:

And for inspiration:

No matter what is going on, I'll always check in and continue with prayer, it's all I have to really offer. I know that prayers will have an impact, I firmly believe that, always have.

Keep it going LBJ.

quote:

I like doing what I am doing here. I like writing, I like philosophy, I like to make sense of what I am, who I am, what I do here and what I think about.

Thank you.

quote:

Originally posted by lbj:
Now that the Votrient is leaving my system over the coming days, I hope to knock our house off it's foundation.

The quality of life on Votrient was pretty poor. The side effects were numerous and intense.
We will see how the next drug fares with me.

I too have been reading and thinking about you and yours lbj. Most days I read with a heavy mist in my eyes. Your post above was extra hilarious give the context.

Thank you for the laugh. I hope your lady soon looks at you and whispers "I have a bad feeling about this"

We were all pretty surprised yesterday to find that the Votrient was not working. Apparently it is rare though not unheard of.

At first I thought that given the powerful side effects, I figured it was working.
Then in the last 30 days, each day became a little worse as far as how I felt.

In all seriousness, it got so bad the last month, if I got out and about, 30 minutes was my limit. I can do that maybe twice a day.
If I have to stand somewhere, 10 minutes max before exhaustion.
Add in some vomiting, bad intestinal track, skin problems, stomach hurting, no taste or bad taste and it a bag of crap as far as how I feel.
It is not unusual for cancer drugs to this to people and it is hard to deal with.

One can empathize and all, and I used to try to with friends and family who got sick, but it's worse that I thought it would be once it was my turn.
I had no idea it is as bad as it is until I personally experienced it and will again probably when the new infusion somethingoranother gets started next week.

I guess what I am saying is that it is tough to do these drugs and one's quality of life suffers greatly. Sometimes it is tougher to keep a positive outlook than many realize.

It's not a brag, it's not an I need sympathy post here. It is merely informative for those who do not know.
You really do have to be tough as nails when taking some of these drugs.
I am not sure I qualify as being tough as nails.
In fact, I know I am not tough as nails.

It's been almost 42 hours since my last dose of Votrient. About the only thing that is improved so far is that neck and shoulders do not feel as tired as they used to in the morning as I sit at my computer having coffee.

I am trying to find out just how long it takes for this drug to exit my system, but I have not found that answer yet.

It would be nice if sometime between the time when I went off the Votrient and start the new drug, that my taste will return temporarily so I can go down to a local mexican food place and chow down with wild abandon.

Yes, that would be great. I have not eaten a normal meal in 3 months. And if I did, I could not taste it and forced myself to eat it.
That's a tall order to force yourself to eat when you don't want to.

Yeah, that's the ticket, I wanna put a bib on me and start stuffing my face with rice, beans and some cheese and onion enchiladas.
I wanna put so much food in me I have to go throw up and return to the table and stuff myself over and over. I really really do.

Sorry to be graphic here but I have been missing some of the more basic instincts and would love to restart those even if only for a short while.

I am amazed at how much the cancer and drugs take from one's life.

Yes you DO qualify as tougher than nails. I know I couldn't deal with this as well as you. You have my sympathy, my respect and my sincerest hopes that you'll kick this cancer business square in the teeth somehow.

Most here have been privvy to the physical stuff, but I haven't really gotten into what the drug does to one's brain.

The Votrient made me forgetful in the sense that I cannot retain a list of things in my head regarding things I need to do.
I may have a simple list of 5 things I need to do quickly around the house when I get out bed.
I can accomplish up to three of those tasks at a time, go lay down and then remember there were 2 more things to do.

When typing, I mistype and misspell words a lot more often.

Since the cancer is still spreading, it going to the brain seems a big worry to the doctor.
I constantly have this fear that the concentration problems may be cancer in my brain as opposed to side effects of the drug.

Of all the things I could lose in this war, I hope the brain stays put. But I don't get to make that call.

If you read some of my posts, then come back later and reread some of them, you will notice all the changes I make.
It's like I forget words and plurals and things and it takes me 3 and 4 edits or more to get anywhere close to what I had intended to write.

It's just the way the story goes these days.
Another challenge as it were.

LBJ, I am sorry to hear that chemo is not working.

I would look at nutrition supplements and eliminate sugar from the diet. Here is an article that explains how cancer cells grow and reproduce. Your objective is to starve cancer cells by eliminating sugar in your diet. You can add lemon juice to water to help your body become alkaline. Also drink plenty of water to flush the chemo out of your body.

http://www.vrp.com/digestive-h...maximize-your-health

You also need to stay focused and have positive thoughts. Go shooting and/or do things that you enjoy.

I would get a blood test like that offered by the Life Extension Foundation. You probably have low levels of vitamin D3.

http://www.lifeextension.com/V...ale-Panel-Blood-Test

http://www.lifeextension.com/p...mples/Male_Panel.pdf

For exercise, walking helps push the blood up from the lower extremities without over exerting yourself due to your weaken state.

41

quote:

Originally posted by lbj:
Most here have been privvy to the physical stuff, but I haven't really gotten into what the drug does to one's brain.

The Votrient made me forgetful in the sense that I cannot retain a list of things in my head regarding things I need to do.
I may have a simple list of 5 things I need to do quickly around the house when I get out bed.
I can accomplish up to three of those tasks at a time, go lay down and then remember there were 2 more things to do.

When typing, I mistype and misspell words a lot more often.

Since the cancer is still spreading, it going to the brain seems a big worry to the doctor.
I constantly have this fear that the concentration problems may be cancer in my brain as opposed to side effects of the drug.

Of all the things I could lose in this war, I hope the brain stays put. But I don't get to make that call.

If you read some of my posts, then come back later and reread some of them, you will notice all the changes I make.
It's like I forget words and plurals and things and it takes me 3 and 4 edits or more to get anywhere close to what I had intended to write.

It's just the way the story goes these days.
Another challenge as it were.

Chemo brain is quite common. I noticed the same thing when I was on chemo. Facts and figures I could normally recall quite easily were often just out of my grasp. I had to write anything that I wanted to remember down. And sometimes my posts looked like they were written by a drunkard.

Hopefully it eases up a little was they switch you to the new drug.

I enjoy all your posts on all topics lbj. Praying for your health and I hope the medicine changes make you feel better.

Hey LBJ,

I've avoided posting in this thread, not because I don't care, even though I do, but I suppose because I don't really feel like I have much to add to be helpful. I want you to know I've been thinking about you and praying for you daily since you first broke the news.

It was my pleasure meeting up for dinner in Dallas all those years ago, and I smile thinking about changing flashguy's tire on his Mustang after we ate, what an odd looking group we were.

Enough reminiscing, just keep on keeping on, and write down as much as you can, make some video or audio recordings for your family and loved ones, write some letters while you still can. (Have Para arrange to keep this thread) and I hope you can keep the goofy grin and laugh pasted on your face until the end.

Wanna hear God laugh, tell him your plans.

Keep being you, cause that's what us Toms are good at.

~Tom Bailey

Mr LBJ - what you have shared here is incredibly encouraging to all of us. The thoughts you have are valid, the grace is you have the courage and resolve to share with us the up's and down's of this saga - we are all better for this interaction.

My panic gene would surface if I were dealing with all of this - talk about incoherent...You on the other hand have been genuinely expressive and real - this is the value in sharing, it gives us the understanding we need to be along side with you!

I do not recall who said it, but there was a regular radio show on Christian station and it began with "God is still on the throne, and prayer changes things" - this I need to be reminded of daily.

I too, am a believer in Christ - thank you for sharing your strength, battles, joys, everything!!

I was in a donut shop several years ago and the regular coffee klatch was debating the existence of God and His power - next to me was a woman with her grand-daughter. Se spoke up clearly and with resolve she stated she was diagnosed with a very serious cancer [many tests as you are aware to determine this] and that surgery was likely the only option she had and even that did not give her any real odds. The day or two before the surgery, she was again x-ray'd for the doctors operation strategy - lo, cancer completely disappeared - seriously. She was humbly genuine she was one such miracle that the klatch was struggling to believe could be true.

My prayers as well with you - Your faith is so precious and vital, this is when faith can be tested - please be encouraged!

LBJ

If you can get an MRI of your head it will give you a very clear picture of what's going on. As mentioned before I had my 2nd stroke on Oct 4th with brain surgery on Oct 7th. The tumors exploded in my head causing the stroke. I had 10 total tumors in my head. After Gamma Knife radiation, I now have 4 very small tumors. If there is a problem with insurance pay for it yourself.

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