Monday, September 28, 2009

Who is Joey?

Okay everybody, here's the answer so many of you have been looking for regarding Joey.

Joey is Melissa's nephew. I've known Melissa since 1965 and have been a part of her life off and on for a long time.

His momma is Melissa's sister. His Dad was a cool dude from the 50's that had neat scooters and eventually, neat cars. I was there when they brought him home from the hospital so I've known Joey all his life.

When I was living out of town, whenever I'd come to Shreveport, I generally came to see Joey because most everyone had already moved away. When Joey decided to come home from Chicag0, many years ago, I put him up in my condo for a month or six weeks or so. When I had the wreck Joey just took custody of me and took me home with him when I left the hospital in Shreveport and was preparing for the brain surgery in Houston.

When Tim Jr and Kristin arrived, Joey converted one of the rooms in his house to a bedroom for Jr and Kristin. He called it the Butler Suite. When all of us returned from Houston and I began my chemo and radiation, Joey took all of us home with him.

In any event, for those of you who continue to ask, that's who Joey is and how the connection had unfolded and remained in tact all these years.

Thanks for asking. Joey needs to get the humanitarian of the year award.

Sr.

Saturday, September 26, 2009

Harris sent a picture of Noah

Doing better by Saturday night.

Spent the day at Joey's checking the house as he's out of State for a few weeks. Checked my email and found this picture of Noah on his motorcycle. How cool is that for a 3 year old. By the time this youngun gets old enough to drive I figure that we won't have to worry about all the craziness going on in today's world. I'd be scared to death to aggrevate this one. He'll stick that moustache on his upper lip and kick all the butt all of us need kicking. Great job Harris. Noah, you are one cool dude.

Sr.

Friday, September 25, 2009

Sick as a dog, wore slap out

Don't know what's going on with the stomach. I've had the worse case of nausea lately and I can't figure out how that could happen since I'm off chemo and radiation and have been for 8 days.

Fatigue has been up and down but the last two days have been benchmarks. Can not keep my eyes open and have started taking the morning and afternoon naps again. Pretty frustrating.

Thought I would post this so those of you who send emails regarding the "no posting activity" would understand.

Will focus on rest and diet over the week end and also ask Kristin to post the pics of my last day at radiation.

Hangin tuff but feeling like I've been through ten rounds with Mike Tyson.

Sr.

Wednesday, September 23, 2009

Made the trip !!!!

Just a short note about my trip.

Made it today and did so without any problems. I'm tired but not tired as a result of overdoing anything. Didn't leave until 9 a.m. so I didn't have to hit it early and run hard.

Met with Vic, Tab and Justin at their office which is a real nice place and quite comfortable.Had lunch with Vic and Justin and then returned to Jr's place in Shreveport. Best way to reouperate is to recouperate with friends.

Still trying to get pictures from Kristin about my last day at radiation but haven't been able to get them. Don't know what the problem is but I hope to be able to get them and post them on the blog.

Ya'll be good, will fill you in later on stuff such as motorhome, etc.

Sr.

Tuesday, September 22, 2009

Another good day

Slept till about 8 this morning. I probably had 9 hours total. Didn't have to take my anti nausea pill today. That's a really good sign that the "stuff" is getting out of my system. I also did NOT have to take a nap this morning or this afternoon.

Joey took the motorhome to Al Carroll's around 3 today. They will finish the suspension work that he doesn't have the tools for plus they'll get it inspected. They will also finish the fine tuning on the generator which is running but for some reason is blowing fuses. That's pretty much going to bring it back to a fully functional condition.

Still haven't heard anything about Tim Jr's orders. I guess that's just the way things go when so many people have to sign off on a transfer of a guy in the Navy. I'm gonna be fine for at least 5 more weeks as I'm going to take some of my 5 week period off with Tommy and Jay. I told Jay about it and he said that would be great but added: "You will be restricted to the scale house but you can bring your cell phone and your Dodge book". Nothing like having an employer who .....uh...shall we say..........understands stuff.

In any event, I'm feeling better everyday and now I'm feeling stronger. No more staggering around. I can't wait till tomorrow. I'm going to have lunch with my buddy Vic. Maybe Chance will be able to come, too. I'm really lookin' forward to that as I haven't seen them since the wreck except for a brief period while we were driving through Shelbyville when we were on the way to the Shreveport VA from the Debakey Med Center in Houston. If I make that trip okay, I'll be really confident about the next. It's only 45 miles from here and if I wasn't sure I could make it, I wouldn't go.

I've got to run to the hospital for a minute but only to see a friend, not for me to do anything about my situation.

Will let ya'll know how tomorrow goes. Play nice.

Sr.

Monday, September 21, 2009

Best Day!

Woke up at 7:37 this morning and had a quick breakfast. Went back to bed around 9 and slept almost 3 hours. When I woke up from the nap, I realized that I was starving. I touched base with Joey and set up for lunch.

I realized that I felt better at noon than I had in a long, long time. I was under the impression that the completion of chemo and radiation meant that I would be back to normal in no time. That was an incorrect assumption.

I've since discovered that the effects on my body from the six week period of chemo and radiation takes a while to go away. I'll have to admit that I was a bit depressed about the continued fatigue when I discovered that I wasn't ready to jump up and go camping. I simply thought that it was over and I could get on with the business of living. Wrong!

I was going to go to the hospital this afternoon to check in with Oncology to get a better handle on things but I've decided to not do that as it's pretty hot and I can't sweat until I get my hydration numbers and the electrolytes where they need to be.

In any event, for those of you coming off chemo and radiation, be patient. It doesn't go away over night and the 72 hour "full saturation" period for chemo does not work on the coming down side.

It apparently takes more than 72 hours for all the chemo to leave. I'm still having to take my anti nausea pills even though I'm not taking the chemo and haven't for over 100 hours. I'm NOT throwing up but I can definately tell that there is still something "different" about my stomach.

I'm not sure how much longer that will last and until I find out something more specific about the time needed to heal from radiation, I won't have a clue about that either. I just know that Joey is real insistent about the proper amount of rest needed to overcome what he calls "The assault on my body" and now that Kristin is back, I'm sure she will be, too.

I'm going to be good and not head south for a business meeting to discuss stone prices and the Haynesville Shale. When I find out from the real powers that be at the VA, I'll let ya'll know.

Kristin Home! Yeeeeeeha!

Sr.

Sunday, September 20, 2009

FFI, not guilty!

Tim Jr tells me that the Navy has a term for the conduct exhibited from time to time from guys like me. He says that they call it "Failure to Follow Instructions". That would be "FFI".

I say that being a combat vet with an honorable discharge and a guy that has decades of experience in all kinds of things, entitles me to make the rules, or at least most of the rules.

This morning, I called Joey to see if he'd let me buy him breakfast and make a plan about several things that he and I have going on at the moment because he's fixin' to take off on a 3 week long trip out west. I'm getting ready to take off for 5 weeks and I just wanted to make sure that I was up to speed on everything.

He was flying this morning so I missed our visit. I went to Strawn's, ate breakfast and then decided to go to his house where the motorhome has been parked because I need a couple of things that live there.

When I arrived, as I walked in the door to the motorhome, I cut my left arm. I freaked because I'm not suppossed to bleed at all, even small bleeds like the kind you would experience while shaving.

I hauled it to the medicine cabinet in the bathroom, put a toilet paper compress on the arm to stop the bleeding and soon after, applied an anti bacterial band aid to the cut. Everything is fine.
I co-agulated just fine and have since then, showed Joey the cut and reapplied another band aid.

I will admit that I had a nightmare vision of Doctor Haddad spanking me with a belt as I lay in the emergency room trying to explain how all that happened. I could hear him say: "You're not listening to me".

NO BIG DEAL! I'm fine, I no longer have to fear being a "bleed out" and no longer have to be so fearful of every step I take.

IN any event, I'm fessin' up on this deal because I know that the minute any of several people that see this cut on my arm, they're gonna give me the "what for" and I just wanted to put this out there so everybody will know up front.

Feeling better without the chemo but am experiencing a higher degree of fatigue than expected. It seems that all I do is sleep. I'll go to bed anywhere from 8:30 pm to 11 pm depending on how I feel. I'll sleep till around 7:30 or so and get up to eat breakfast. I'll go back to bed around 9 a.m. and sleep anywhere from an hour to almost 3 hours. I'll eat lunch and do it all over again after lunch and end up sleeping another 2 to 3 hours. Damnedest thing I've ever experienced. You'd think that with no chemo and no radiation that I'd get a couple of day's rest and perk right up. Wrong!

Think I'll try to sneak in on the fat cat at the hospital tomorrow and see if I can accellerate this period of time that they want me to recover from the last 3 months. Maybe they'll give me some vitamins or something like that.

Joey says that I am under-estimating the "totallity" of everything and not including the wreck, the hydration problem, the brain surgery, the chemo, the radiation and the fact that I've been nuked constantly for 6 weeks. Lisa, Cathy and Waylon told me but I apparently couldn't connect the dots with being "off radiation" and the fatigue being so constant. Anybody ought to recoup from anything with 14 hours per day of sleep.

Okay, that's about it. Going to supper at Melissa's tonight as Joey called her and discovered that she's cooking that famous meatloaf recipe of mine. Ya'll keep hangin in there and know that I'm doing better every day even though the fatigue is worse than ever. I'll overcome it.

Sr.

Saturday, September 19, 2009

I understand the fatigue thing.

They told me that the radiation treatment would bring about higher and higher levels of fatigue. I heard them say that but my brain apparently discounted the warning.

When they finished the required dosages on Thursday they repeated the warning. Since then, I've been sleeping roughly 14 hours out of every 24. Sometimes I go back to bed as early as 9 a.m. I always go down in the afternoon but now it's quite different than it was when I was below 5,000 at radiation.

In any event, I'm sure that I'm catching up on the energy level despite the fact that I can only go "so far" before I crash again. I'm still on the steroid and the anti nausea stuff just to be sure. The steroid is a given and I think, since chemo is over with, I can do what I want or need to do as it relates to anything else.

That's about it for Saturday. Too tired to get into the madness of it all.

Hello, Jan.

Can't believe Washington beat USC.

Ya'll play nice.

Sr.

Friday, September 18, 2009

Hey, Noah

Noah,

Go into the kitchen. Get that mustache. Take it to your daddy. Stick it on his lip and tell him to "Man Up" and send those family pics of you cause your fan club wants to see you in action.

I'm out of chemo and radiation now but have to go to see the doc's Monday to get a clarification of a few things before I start my 5 week vacation from all this stuff. Ya'll play nice and I'll post those pics when Krish sends em'.

Sr.

Recovery from treatment

Been having some computer problems but things now appear to be okay.

Had the last hit of radiation yesterday and followed that with a visit with the doc to demonstrate motor skills and hand eye coordination. Will post those pics when Kristin transfers them from her camera to my email then to Joey.

Haven't rec'd the word yet on exactly what the score is on the malignancy but I do know that I'm off chemo for 5 weeks and off radiation for 5. Whatever that means, I'm certain it's good news.

Oncology said they want my body to heal from the treatment. I am assuming that whatever the radiation does in terms of fatigue etc, they want my body to return to it's state prior to the first visits to chemo and radiation. I'm game for that as my blood counts are suppossed to be key in whipping all this bidness.

I'm planning on headin' south in a few days but I need to get some parameters set with the doc before I take off. I'm gonna go see Jay and Woody come hell of high water but I just want to have some kind of "conduct" statement from the doc before I go. That's been best for me so far.

Also gonna go stay on the south end of Toledo Bend Lake where I found a neat little cabin to rent. Just need to spend some time with all my peeps who I haven't been around since Father's Day.

Ya'll hang tight, soon as Kristin gets the pics downloaded, we'll post em'.

Sr.

Thursday, September 17, 2009

Temporary Computer Problems

Have been out of touch over the past 24 hours or so. Joey said it's short term. Will post asap. Today is last day for 5 weeks.

sr.

Tuesday, September 15, 2009

Now it's Thursday instead of Friday

Finished with radiation today and was told that Thursday not Friday was my last day.

Will have to meet with Oncology tomorrow to confirm that this Friday is my last day for chemo, not Friday week. Krish back so I know it will eventuatlly get squared away and put in it's proper order.

Will figure all that out and let you know how and why this has changed.

It's nap time now as the radiation fatigue demands it.

sr.

Monday, September 14, 2009

Milestone Reached!!!

Doc told me today that I had "something" in my blood that was the absolute best. Can't remember what it was but don't care cause I'm not in the blood bidness. I'm in the cancer killin' bidness.

It had a value you to it that was either 146,000 or 164,000. All I remember was it stung me this morning when they were taking the blood sample in Hematology prior to my Oncology appointment.

The long story short on this had to do with the decision that I would be off radiation this Friday but in addition to that, I would also be off chemo. I'm not sure if the recent increases in fatigue, burned skin and hair falling out had anything to do with the decision or not. In that light, I also don't care what stimulated the decision.

Just wanted to post this as some have been a little concerned that I didn't make the post yesterday as anticipated.

Leland is here and he said to say hello or "o hell".

Joey came by and went to supper. Dupester stopped in and took pictures that I will post or get Joey to post when Dupe sends em on.

We may try to take cousin Miriam to see Inglorious Basterds. That will be the 3rd time for me and I can't wait to go.

Kristin is home or will be in twenty minutes or so. Can't wait till she's here. There's just something about being totally organized and equipped when she's around.

I admit that I have a hard time keeping everything in line as it relates to food, food time, pills, pill time and all the other stuff that goes with a regime like I've been on. You'd freak if you knew how many milligrams I've taken since this whole thing started.

In any event, when Kristin is here, I can afford to "forget" because you can bet that she won't. I've missed her. She's been gone 3 weeks and 48 hours or so and so has Jr.

Will fill you guys in on some of the specifics as I know that Stan and Hank's family may wish to know how all of this has unfolded.

Waylon, we gonna hook up on the East Texas bullseye deal. Kat, Monalisa, see ya'll tomorrow. Will bring big brother cause he says he wants to hear what ya'll say when you see my twin.


sr.

Sunday, September 13, 2009

Talk about "comfort level".

Phone rang yesterday with news from Melissa regarding a rib eye dinner. Talk about a spark of energy and a caloric rush!

She's one of the best cooks I've ever been around and when Melissa, Sue, Joey or Beth sends an invitation to eat something from their kitchen, you just have to cancel everything and go do it or live to regret it.

I'm pretty tired of eating out but not tired of having to deal with preparing my own meals so I was immediately game to get on with that show. Discovered that Elsa was going to make it, too and since I haven't seen her in a long time, that was double cool. Elsa's no slouch either when it comes to the kitchen.

About 6:15 pm. I tuned in the LSU Vanderbilt game, turned on the recorder to save it for Tim and Kristin and made my way to Melissa's house. When I arrived, Melissa fired up the coals, grabbed the keys to her car and both of us went to pick up Elsa.

We came straight back to Dixie Garden in time to see the coals were ready and made ready the attack.

Talk about a "comfort level".

Girls, wives, family members, when your cancer patient doesn't have enough energy to scratch his head, these baby dolls are life savers and they've been key in making my life easier during all the chemo/radiation and fatigue that comes with the battle.

Think about that for a minute or at least think about the effect they would have on your patient.

They're the girls you dug in high school, they're excellent cooks, they know you're not able to wash the dishes or take out the trash, they'll let you eat your weight in ribeyes and home made dessert and they're real easy to look at.

Foxy wimmenz in the kitchen at 60 can be a whole lot better than foxy wimmenz in the kitchen at 25. Maturity removes all the clutter and lets you get right down to pure friendship without social motive. I love all my high school wimminz even the ones that are married to my high school friends.

So, having said that, let me suggest that you try to contact all of your patient's friends from high school and college and let them know what's up. It's a treat to look at these sixty year old faces and still see that smile that existed when they were 16.

I'm not just talking about the girls either.

"The Dupester" (Steve Dupuy) is retired now and only lives a few blocks over. He's been on call from the git go and can make it to Tim and Kristin's house in roughly 4 or 5 minutes depending on traffic. When Joey is out of pocket, I have a long list of phone numbers that I can call to make sure I don't get busted driving which won't be legal till Friday.

Trust me, the more folks you have in your support group, the easier your load is going to be, and the better off your patient will be. It's neat to have somebody show up that you've known forever and when that happens you get more of that positive mental attitude that is so important to kickin' that cancer's butt on a 24/7 basis.

That's pretty much the story of Saturday. Best kinda therapy a rib eye freak can have!!!!

Ya'll have a nice Sunday. Play nice.

Sr.

Saturday, September 12, 2009

Big Brother is comin'.

Leland's comin Monday. Prolly won't bring that alligator but he'll bring a boat load of BS and we'll catch up then. Don't remember much about his last visit but I know I've seen him at least 3 times since Father's Day. Stan, Sue, ya'll get ready and I'll call about his ETA.

Sr.

Friday, September 11, 2009

Short note about Noah's Picture

Want everybody to know that I"ve talked to Tim Jr about getting Noah's picture emailed and inserted into the archives for your copying.

He's in the process of moving so he doesn't have a computer hooked up in his house at the moment and you don't get to play with the computer on the ship. It's not like that. He told me that he would talk to Harris about it and get some more shots.

Just wanted to insert this in front of the post I made below because I've had so many emails from "The Noah Harris Fan Club". Several have already copied the Man Up story but they want to add Noah's picture and hang it on their refrigerator doors. Good job, Harris!

Ya'll play nice while I'm gone!

Sr.

The Ghost, the Army and a little back shootin'.

I've been asked to make a point or two about the methods I've used to ignore certain negative things surrounding terms like "worst kind of tumor on the planet" and "malignant brain tumor".

I've also been asked to elaborate on some of the things I've implanted in my brain as it relates to the ficticious characters operating there and the sometimes perverted comrades who are part of my Army.

So, in pursuit of that, let me say a couple of things about "perception" and positive mental attitude.


I couldn't do anything about the dosages, the malignancy, the trauma to the brain and head, and a long list of other stuff that's totally out of my control. I did however, accept them and began to plan a strategy to deal with them.


Almost to a man, everybody at the hospital continued to tell me that a positive mental attitude is 65% of the job. They explained things like the effect that laughter has on brain chemestry and how many more muscles it takes to frown than to smile.


When they did that, I began to view my body as "The Country" and my cell structure as my "Armed Citizenry".


I brought in the close air support pilot, the gunship pilot and the scout pilot that still lives inside me everyday.


I removed the politicians and all the rules of engagement that we were forced to live under and then instructed the Commanding Officer (me) that there were no rules at all except those that were made by me. The rule then became "There are no rules".


Next, I started to mentally associate with the likes of John Wayne, Kirk Douglas, Bruce Willis and Arnold Swartzennegger or however you spell that. I added some Lone Ranger, Brad Pitt, the Basterds, and some other individuals that you could say were "shoot now and ask questions later" kind of people.


The more I added to my Army, the better I liked it, the better I began to feel. I began to tell the gang at radiation that "the reason you see my finger moving on the hand ring I hold on to while I'm being radiated is because I'm pulling the trigger on the minigun I had in 70 and 71.

By the time I finished fabricating all these warriors and cancer cell serial killers, my brain chemestry was right where I wanted it to be.

It's nothing at all for me to have these visions of tracers flying into the backs of each cancer cell and watching each cell grab for it's back as it falls to the floor, grave yard dead. I always said that shooting a guy in the back, a guy that is trying to kill you, is the absolute best policy.

It removed any possibility of him getting a shot off at you and killing one of the crew members that you were responsible for. I never lost one single crew member and in fact, never even had one wounded. Back shot, it's the ONLY way to go.

My Army wanted a body count so I met with Waylon and the gals and asked about it. We received the formula for figuring all that out but I never actually ran the numbers because we were told it was almost two million cells that we'd killed up to that point.

When I'm asked "how are the treatments going", I think of the Army, the body count, the guys I have in my corner who often times say "Load 100% tracer rounds and burn their asses up" and I simply say that they're going great.

All of these things either add up to "craziness on my end of things" or an uncanny ability to make mind over matter work for me, my brain chemestry, my mental attitude about all this and the day to day battle that has to be faced without depression or even concern.

I even created an alter ego that would become a "ghost" in the event that I died in the first 90 days after surgery. I'm sure there are some folks out there that would NOT want the ghost of T L Butler to come for a visit. The more I thought about that, the more I laughed and the more postive brain chemesty I created. Think about that for a minute. You upset about anything going on in the country right now? Poof, just like Samantha on Bewitched, you could just wrinkle your nose and arrive at any given place to do your ghostly duty. Yeah, I liked it alot.

After I put all of these characters in place I had to tell everybody that my perspective about life and it's priorities had totally changed. I let everybody know that negative things simply weren't allowed to exist in my environment and to violate that mandate would be met swiftly by me and my new rule book regardless of who you were. I just don't allow it. Make sure you eliminate everything of a negative nature.


Something like that is hard for a family to swallow until they stop a minute and try to gain a different thought process by putting themselves in my position or the position of their family member. It's really hard for folks to try and tell you how they would feel if they had malignant brain cancer. Kinda like a woman having a baby. No way for a guy to know.

In any event, my group has stood up to the plate and actually become part of that Army of crazy people who participate in the malignant cell serial killin part of the job. Look at some of Joey's posts and you'll see what I mean. He's just as much of a sicko as anybody is, he just knows how to portray it better by computer.

On the other side of the page there are those who are not so crazy.

They run prayer groups and continue to do follow ups regarding that. My brother is in a prayer group that sent me a "prayer blanket" with my name on it. There are employers, family, friends, neighbors, old high school buddies and even an ex wife who offfered a spare room to recover from surgery.

I mean, my support group is bad to the bone and they've made it happen for me. They will do it for you too if you can get everybody on the same page, a page that is almost certainly unlike any page you've ever been on before.

When you add all that up, it totally eliminates the small stuff that you really do have control over. Make Stan or anybody in this same position, as comfortable as humanly possible.

That's what Kristin and Tim Jr did for me and I want for nothing, I have everything and of everything I have, if I want to change it, all I have to do is say I want it changed. I'm totally comfortable and that takes away from the somewhat infrequent problems you have with chemo and radiation. Don't have any problems with chemo any more and only fatigue from radiation. It's not a big deal when you have HD tv, a boston cream pie in the refrigerator and a support group as big as mine.

I guess that's going to be all for now. I know this sounds a little crazy to some of you but I guarantee you, it's not about the things that sound crazy, it's about the things that work and don't work. Do the math, you'll see what I mean and probably be shocked at how little effort it took to hit that level of comfort that makes everything so much easier to endure.

Thanks to my support group again!!!!

Sr.






The Last Sulfamethoxazole Tablet.

No later than 8:30 p.m. tonight I will take my last Sulfamethoxazole tablet. Will be so glad about that. Clearly, I'm getting close to the end of the road on some things.

Also, I found out today that I've had over 5,000 hits (unit of measure of radiation dosages) since the beginning. I thought it was somewhere around 1,600. That may explain this fatigue thing which really isn't a big deal in that all you have to do is go lay down and close your eyes to fix it.

T minus 5 days and counting. This coming Friday will complete the radiation therapy and release me from the schedule that finds me at the hospital every day. I've had a ball with the gang there but I'm ready to be released and focus on the remaining 10 days of chemo that are required before I get my 25 day off period.

Don't know how all that double dosage of chemo thing is going to work but really don't care all that much as everything the doc has said has unfolded exactly like he said it would and he told me that when the radiation dosage drops to nothing that I would be able to handle the double dose of chemo. I believe him.

I guess that's a wrap for today except to say that I've been asked to write something about the methods one can use to maintain a positive mental attitude during times like these. Lots of other folks going through the same thing I am and they continue to lean of us for advice and guidance to assist them with their support group needs while helping their family.

Won't write about that today as I'm just in from radiation and I don't think I can finish it so I won't start it. Ya'll have a nice week end. Maybe I'll get it done this week end as I'm off Sulfa MOnster, radiation AND chemo! Yeee Haaa. Go LSU, Hey Martha Sue and Otto.

Sr.

Thursday, September 10, 2009

Onan Lives !

Years ago, I began using my motorhome as replacement for hotels that I would normally stay in when I was on jobs that took a long time to complete. It only has 55,000 miles on it but it's an older model and needed some work to bring it up to standards.

I had the headliner replaced when I moved it to Leesville to build the stone yard/rail spur. Jenny threw a truck load and a half of "stuff" away when she agreed to clean it and replace all of the bedroom stuff from pillows, sheets, bedspread covers etc. She basically did a remodel job on the inside.

Better than that, Joey fixed the Onan generator today.

It only has 600 hours on it but it hadn't run in 4 or 5 years so the work over has required points, plugs, condenser, a new air filter and some wiring to get it to crank. It ran the roof mounted air conditioner which was blowing cold as ice. When he tried the microwave oven while the air unit was on it lugged down a little bit but that was before he increased the speed at which it runs when it's under a full load.

There's still a bit of fine tuning to work on but he's working on that and hopes to find a solution to the rough idle and the "lugging under load" by tomorrow. May be a govenor thing or some kind of fuel control module that gives it the "gas" when you start pluggin in microwaves and air conditioning units.

We already bought a new air compressor for the air ride suspension system but will probably have to get an RV place to install it as they have the tools that he doesn't. The end result is going to be a motorhome that cranks in an instant, has full generator power at any time, rides like a land yacht and is clean as a pin on the inside.

Don't tell anybody at the hospital but I'm planning on going to spend the night in Opelousas with Jay, Woody and the guys, then go to Lake Charles for a visit. Going to go back to Leesville, too but not necessarily in that order.

I'm going to be off radiation in one week and one day and then will have chemo for 5 days on and 25 days off per month. I do the chemo at home so I don't have to be in the hospital everyday for chemo like I do for radiation. Look at that rig at the top of the page and you'll see why. IT's a big machine and, like a Daryl Zanuck movie, it takes a cast of thousands to make the whole department work.

Speaking of radiation, the fatigue level really caught up with me over the past week or so.

Doc told me today, as did Waylon, Cathy and Lisa, that it's a "comulative dosage total" thing but added that they have been really impressed with the methods I've used to fight the fatigue and still maintain a positive mental attitude about all this. Despite that, fighting the fatigue isn't really what it's all about.

I can't help the fatigue thing anyway so I've given into it like they asked me to do. I just make an extra special effort to have Joey bring me to Tim and Kristin's as soon after radiation as possible so I can immediately get into some pajamas and close my eyes. It's helped in that I'm sleeping somewhere around 10 +hours per day or better and that amount of sleep helps me escape that totally knocked out feeling that comes when you don't nap.

In addition to the fatigue, I'm beginning to have some burn spots on my head. Waylon, Lisa and Cathy, when they noticed the spots, hooked me up with a lotion called "Alra". It is some super, super stuff.

It's formulated to address "the skin care needs during chemotherapy and radiation". Label says it's "100% aloe vera gel, collagen, vitamin E, lanolin and allantoin". I'm tellin' you, this ain't ya momma's skin cream. It's great stuff.

One last note about the head.

This hair loss thing stimulated me to call Leland. After I explained all of that to him, he just said it was okay cause we were used to that. For some reason, it made me wonder if he really did have that alligator in the trunk of his car.

Anyway, talking about the recent discoveries around the temporal lobe of my brain and the connection of that with the hair loss, I wondered if they ran a tube up my nose and shot the radiation from the inside out instead of the outside in, would it grow hair instead of making it fall out? Hell, it's worth a try.

Kristin spent a lot of time attending to the sterile needs of my head wound immediately after surgery and after the staple removal. As a result of that and her use of hydrogen peroxide and some kind of alcohol impregnated cotton pad, I don't have much of a scar.

Joey's creed: "Don't sweat it, chicks dig guys with scars", may be a lost cause if the scar isn't big enough. When we finish all this I'll get Jr to take a profile shot for the curious.

That's it for now, gang. Feelin as good as can be though very fatigued. Looking forward to lunch tomorrow cause it begins another free weekend. Waylon, Lisa, Cathy, Steve, ya'll are just the baddest of all times.

Sr.

Wednesday, September 9, 2009

Modern Medicine is a Miracle.

If this is what malignant brain cancer is like, modern medicine is a miracle. I've come a long way since the day of the wreck and I know it.

Stan, Tom and families, I hope you guys are having as much success with yours as I am having with mine. Just keep hangin in there and doing exactly as the doc says and if he's anything like my guys in radiation and oncology, you'll get the best advice and treatment in the world.

Joey comes by every day and we go through this ritual before radiation. We do lunch at any number of places to make sure my stomach is full and I don't do any nausea stuff during radiation. So far we're batting 1,000.

Lately, since I've gotten my support drugs adjusted to near perfection, we try to get in an errand right after lunch but before radiation. Yesterday we dropped by Sears and bought a (3 gallon tank) air compressor to fill up the air reservoir in the motorhome and aid in the installation of the new compressor that supplies air for the air ride suspension.

We also dropped by the Onan generator store to buy two spark plugs, a set of points and a condenser for the 6.5 KW gen set that's onboard the bus. If we lose electricity and the temperature is hot outside, I'd be ruined. There's a sign on the excel spread sheet that says: "If temperature is 100.4 degrees go to the emergency room".

No air conditioner is a hospital trip for me on a hot day. Glad summer is gone, glad Tim and Kristin's house has a good unit that stays at 73 degrees. Was almost too cold in the beginning.

In any event, Joey keeps twistin wrenches on the motorhome and I keep buyin' lunch. Oddly enough, I've gained weight on my doctor's "bulk up diet" but Joey is losing. Poor thing lost 7 pounds in two days. It's been hot and he's been sweatin' like a pig in a cement parkin' lot. He's leaving for a 3 1/2 week long work trip to New Mexico in a few weeks but Leland and Elaine are sittin on standby and Kristin is coming to Shreveport so I'm not freaking about that.

In addition to that, Steve Dupuy lives 4 blocks down Pennsylvania and two blocks down Finley so he's real, real close. Stanley has been by. Colquitt came over as have a number of other friends who I rely on to fill in the gaps should I need some extra help. In laws live near by, too.

Tanya is Kristin's cousin. So is Shelia.

Ben, Tanya's husband, is Tim Jr's buddy from high school and the guy we lovingly refer to as "Tim's cousin in law". All I have to do is send Tanya an email and anything I need is attended to. Jim B. and Sondra, another cousin, live in a riverside condo on Clyde Fant Parkway which is real close to Pennsylvania Avenue. I haven't had to lean on them for anything but have Jim B's phone number in my wallet and all I have to do is call if I can't get in touch with anybody else.

So far I've been fortunate with Joey leading the support group and I haven't had to do anything on an emergency basis so all of these connections are working like a charm. Kristin is getting close to having everything organized in Virginia and she's comin' back pretty soon. Not sure which date but I think two weeks will find her here. With all due respect to Tim Jr, Kristin isn't nick named the "XO" for nothing, if you know what I mean. She's one organized woman.

I'm at T minus 8 treatments at radiation. Unless I get some really bad news out of MRI or Cat Scan, Friday week marks my last day of radiation and I'm done. The following Monday I start a double dosage increase in chemo and begin a 5 day on chemo and then a 25 day off chemo regimen. Doc says don't freak about the double dose as he predicts, that with the elimination of radiation, I'll be able to handle it.

All in all, I'm looking at a completely different world starting sometime around the 23rd. Complete freedom isn't going to happen but it appears that between now and February, 75% freedom is.

Already talked to Jay and Woody about that and they're tickled to get the old man back in the saddle to advise about the kinds of things that I've spent a lifetime doing. Best employers on the planet, good friends and totally dedicated supporters who have stood by me long before the wreck ever occurred and continue to stand by me like family.

Couldn't have made this the comfortable and financially secure trip it has been without them. Even with the VA benefits I've had, it's cost me a ton of money. I spent over 20 grand of my own cash the first six weeks of this episode.

Even Vic, Chance, Justin and Mark from Texas, my former employers, have helped out. Must have done something right to have so many people stand up to the plate and go that far above and beyond the call of duty. Thanks for all that, ya'll have really been life savers.

It takes roughly two months to overcome the head trauma from brain surgery. It takes a few weeks to get the support drugs adjusted to a point where you don't have to take the pain pills for the head aches that come from the swelling in the brain. That in turn, allows you to stop taking the sleeping pills.

When you get all that done, something that goes beyond the two month time frame to overcome the trauma from the brain surgery, you actually start feeling like a human again and begin to have visions of normalcy.

It actually allows you to start having conversations that go way beyond: "How many times have you been sick today or how many times have you fallen?".

Intellectually, I've been taking part in a political awareness thing that provides all kinds of statistical information about the policies we've had since the end of the second world war.

There's been so much "emotion" recently, emotions that make it very difficult to see things from a reality based position, that getting out of thoughts from the heart and moving over to realities that come from statistics, has been great.

Thanks to Bill Sheehan for the help / guidance he's provided in "letting go some of the emotions from the past and start thinking with your head instead of your heart".

It's been very enlightening especially as it relates to being able to read the dates and the individuals who were responsible for getting various pieces of legislation passed in Congress. Once you do that and you actually view the times, dates and building blocks that find us where we are today, it's pretty easy to see the "why" we are where we are instead of thinking "how in the hell did all this happen"?

There's nothing like getting the facts before you have a conversation with somebody who just likes the way something looks instead of how it works.

All in all, I can say that despite the worst of times I've had since the wreck on Father's Day, the resulting emergecy brain surgery, all the pain from that, the brief but somewhat horrible periods of nausea from the chemo and the fatigue from the radiation, I feel good physically, emotionally and financially. That's a pretty good result if you ask me.

I only need to round up the numbers that start when my 5 day on and 25 day off chemo period starts. When that happens, Daddy gonna be o tay!

Enjoy your day!

Sr.

Monday, September 7, 2009

I want my TOE

Did alot of thinking about the times I spent with Stephanie, Mackey and Joel when they were so little. It wasn't uncommon for me to see them everyday during 1975. I did everything with them including birthday parties where I became "Mr. Magic".

During those times I could tell a scary story to a first grader that would result in one of those blood curdling screams that I visualize as one being made by a red headed school girl with pigtails. I had one called "Injun Joe and the Black Toe" that my Uncle Woodrow taught me as a kid. It could only be told late at night or during a very late afternoon rain storm when it's starting to get dark and is really, really raining hard. You could scare the BeJesus out of em and you could do it again a couple of weeks later if the opportunity arose. It was a ball for me and it must have been for them because they continued to say: "Uncle Tim, tell us a story".

I used to tell them that my older brother kept an alligator in the trunk of his car. That was swollowed hook, line and sinker because he lived in Baton Rouge at the time and they always viewed that area of the State as the place where all the alligators lived.

Spent two days with them and discussed the Butler and McInnis history all the way back to 1850. Was cool.

They especially liked the part where I told them about Gov. Huey Long being kin folk. Aunt Grace told us that when Huey came to Shreveport he would always stop to see my grandmother Butler. She also told us that Mother Butler told the family "not to tell everything you know about being related to the Longs". Seems as though Ada Lavinia married into the Long clan and somehow or another Ada Lavinia Long was kin to the Butler family. That was the connection.

Didn't go to radiation today as it was closed. Instead, I slept most of the day. Needed a little rest as I stayed up to watch the LSU game and then was too hyped to go down. Watched Ben Spies take the lead in the superbike world championship. Wow, a Longview, Texas boy leading in the points for the world championship in his rookie year. Makes you proud to be an American.

Joey and I ate out twice today. Picadillly lunch, Chicken casadias dinner.

Harkey supplied a chocolate bunt cake that has a puddin like inside, surrounded by chocolate chip cookies surrounded by chocolate cake. It's killer.

Melissa supplied Boston Cream Pie. What can I say?

In any event, I didn't have to do much of anything today except get back on the chemo and grab a "catch up nap or two" so as to not sleep too much and mess up my bedtime.

Jr and Joey working out the password stuff to put a new picture at the top. Harris, if you're readin this, tell Noah that I said "Noah Rocks".

See ya'll tomorrow. tb

Sunday, September 6, 2009

Stephanie,Mackey and April

Family came this week end.

Saw Linda's kids minus Joel who is suffering a pulled ham string. Mackey's wife April is expecting a baby around March so I'll be a great uncle again. They were lookin' good and feelin' good too. They took me to lunch at Strawn's and to dinner at Monjuni's last night. Was great.

Watched the LSU game last night. Didn't start until 9:30 and by the time it was over with, I was so hyped I couldn't go to sleep right away. Stayed up till 3, had breakfast with Joey this morning at George's and then returned to Tim and Kristin's house for the couch maneuver.

I'm bushed but will sleep till the energy returns. No chemo today but have religiously kept up with the ondestetron and dexamethazone schedule.........or however you spell it.

Can not figure out how to add pictures to replace Noah at the top of the page. Tim jr, send joey and email with the password or whatever he needs to log in to the blog and change the pics at the top of the page. Noah, you did good, boy!

Have lots of stuff to write about but am going to rest before I get into any of the nonesense that sometimes comes with these postings.

Ya'll enjoy the labor day.

sr.

Friday, September 4, 2009

5 day extension on radiation

Found out today that radiation will not end this coming Friday but will extend another 5 days till Friday week which will be September 18th. Probably my mistake but possibly a result of having a couple of holidays fall in the time period from when I started till this coming Monday which is Lazy Day.......commonly referred to as Labor Day.

In any event, wheter it's the 11th or the 18th is almost immaterial in that it is pretty close to being finished and when it is I only have 5 days beyond that where I do chemo at double dosages then 25 days off. Any way you look at it, the time frame is pretty much upon us where the daily regimen will be over and the monthly maintenance begins.

I have been in the hospital every single day since Father's Day except for some Saturday's and Sundays. I did spend Saturday and Sunday in the hospital here before brain surgery and I also spent the week end in the hospital in Houston after brain surgery.

Will meet with Guy next week and try to tweak my schedule a little bit and let you know.

On the advice side of the blog, let me say this about "support drugs".

You can't do anything about the dosages of certain drugs like the chemo and the antibodies. You have to follow the regime set by the Docs as they really know what's up in that department.

Despite that, the support drugs for brain swelling, head aches, sleeping problems and nausea are within your ability to control. You can tell the Doc what's going on with all that and in each case, they've made a slight adjustment. I don't know where they were when I started but I know that the adjustments that have been made resulted in me not having head aches anymore and the resulting abandonment of the pain killers has made my life much better than before.

The same holds true for the adjustments in steroids. No more standing in the front yard at 3 .a.m. In fact, I probably am getting more hours of sleep than most of you are. Can't say enough about how wonderful it is to have those gone.

So, having said all that about pain meds, steroids and sleeping pills, know that you have the ability to talk to the doc about how the dosages are working or not working for you. It's a good thing and I feel really good about it.

Tom and Stan, "just ask". If it gives you a hassle, just tell the docs.

Off for the week end. Ooooh Rah.

sr.

Thursday, September 3, 2009

Super good day today

Hey Everybody,

First of all, I am NOT running for the Senate.

That was just a post I made to demonstrate how funny dreams can be when you're taking as much "stuff" as I'm taking. I really appreciate the vote of confidence from all of you and especially appreciate the videos that were sent of the "proper way" to act when in Congress. I think it was from the Senator from Minnesota or maybe Michigan but whoever it was, he sure "raked Congress over the coals".

It would really be sweet if we had every player in the building working on the same game plan that this guy uses. He was incredible.

Spent over 2 hours today with Jay. Was great to get caught up on things that have unfolded over the past 8 weeks. Talked to Woody while Jay was here and that was cool too.

I'm not saying that Jay and Woody would think that anyone may end up dead or an invalid when you have malignant brain cancer cause it just ain't so!!!

What I am saying is there's a huge sense of comfort and relief to talk to guys that you've known for decades and for them to actually "see" instead of hearing, that you're okay, you're mending, you have your wits about you and you can actually talk about technical matters and efficiencies without....uh....foaming at the mouth or falling off your chair. No disrespect to others.

Still looking forward to Friday week. Even though I dig the radiation department, this means I'm closer and closer to a different sense of freedom and comfort. Lisa, Kat Girl, Waylon and Steve, ya'll are just the baddest of all times.

Will sign off now and reiterate, runnin' for Senate was a joke but thanks for the vote of confidence.

Sr.

Wednesday, September 2, 2009

I can't believe that I'm getting votes.

I can't believe I'm getting votes! The post below was just a funny thing that I wanted to do as a result of these dreams the doc said I'd be having.

I even had dreams about work where we were using a conveyor to convey a recycled product on it. Unlike a normal circumstance where you might just watch it, my dream had percentages flying off the belt in a manner that would let you digitally see..........5.4%, 5.5%, 5.3%. It actually would produce the digit images of the percentages we needed to see.

The runnin' for Senator post has produced alot of funny email responses. I have a buddy from Ohio that said I had his vote and he doesn't even live here. I had a number of votes before I ever left the parking lot today. Funny to me. tb

Senator Timmy

Doc said I'd be having some pretty wild and vivid dreams. He was right. What do you think about this one that ended up with a picture of me runnig for the Senate.

Came up with the justification for that when I read that Kennedy died from the same kind of brain cancer I have.

Justified all of that by saying that first of all, I'm going to survive this one longer than he did because I am in so much better shape than he was when he was first diagnosed and I'm 17 years younger.

When I thought about all the other things that I might have in common with that particular senatorial situation I visualized one day in 1975 when I was rip snortin', knee walkin', commode huggin' drunk and said to myself: Well, there's one similarity".

I built all of the conveyors for a plant in a little place called Bon Wier, Texas. That's about 25 miles or so west of Deridder, Louisiana where I was living at the time. The job superintendent was named Bob Henry. He was a former Navy Seal with a tour of duty in Vietnam so we had alot in common.

We used to drink lots of Budweiser and go buzzard hunting as often as we could. Bob Henry hated buzzards because one crashed through the windshield of his jeep and caused him lots of trouble. We drank beer and killed buzzards. That was the deal when we were riding aroung the area.

Now, the way all of that relates to my senatorial ambitions is this.

I have the same cancer that Kennedy had. I sunk a 1975 Toyoto Selica in a creek that I thought was a mud puddle. I didn't have a woman with me and the creek wasn't named Chappaquiddick or how ever you spell it, but at least I was drunk and sunk the car. That's when I figured out that I'd fit right in.

I began to read things about former administrations and their voting record. I went all the way back to LBJ and Jimmy Carter.

I saw where a bill was passed that allowed Congress to access the social security funds. I decided that the first thing I'd do was introduce a bill that stopped all of that. My bill added a note that stipulated: "If you didn't pay into it, you can't take out of it". I liked that one alot.

I then started looking into other things like the Panama Canal Zone. Right now, we have to pay a $900.00 per container fee for every container on a container ship that's heading to Japan. That's more money to traverse the canal than the freight bill to go from the canal to Japan. Go figure that one out.

What I decided to do then was introduce the bill that would have us dig a canal from the West Coast to the East Coast at the Gulf of Mexico. I wanted to call it the "Timmy Canal". Joey liked the idea but I think he wanted to call it the Americanal.

When the current congress asked how in the hell I was going to pay for it, I told them that they would be taking a huge pay cut as well as a cut in the allowances for their staff and that it was not going to be a problem. When they asked me to explain I told them that we would save a gazzillion dollars on our border security because the canal would be better than a fence. See how smart that is.

The more I dreamed, the madder they got. Seems as though I was upsetting the apple cart. At that point in time I came up with the idea of "Timmy's Instantaneous Senatorial Recall Button".

That bill would have authorized the voters of each State to demand and get another "vote" for their senator or representative by simply pushing the 'kick em out" button on their computer.

If the guy that ran a campaign didn't vote the way he said he would vote once he got into office, The Timmy Instant Senatorial Recall would allow us to remove his ass from office "right now". Maybe the runner up would go in or maybe you'd start another election for the Senate but in either event, what difference would it make during the time the guy got kicked out and the new guy got in? Some of them aren't reading the bill proposals anyway.

This isn't all of the Timmy for Senator stuff but I thought you'd like to see what comes from the drug induced dreams they said I would be having.

Let me know what you t hink and I'll asdds some specifics for you to either laugh about or seriously consider. Who knows, somebody may actually come up with an idea. Pardon the drug induced rambling.

YIPEEE. Timmy for Senator! Man, would that be fun!!

Sr.

Tuesday, September 1, 2009

Paper work out the ying yang.

Just for information sake, if you're in the VA system, there's a lot of documentation required. I submitted my DD 214 years ago and have been qualified, certified or bonafide for years in the Agent Orange side of things.

Follow ups are required and you need to make sure that you have all your military records handy.

I am really fortunate to have saved everything including pictures of me standing in a field of Agent Orange Defoliated trees. From a standpoint of validation, anybody who has been to Vietnam, and there's a zillion of us, could tell by looking at the trees. It's another one of those no brainer things. Look behind me and the other pilot in the picture of two guys wearing the green flight suit and you can see part of it. The bark is literally falling off the trees.

In any event, I had a great day today with the radiation gang.

I don't know how long it's been since I've been off of Hydrocodone and Temazepam but it has made enough of a difference that a good friend of mine sent me an email and told me that it was apparent to him, from my personal emails to him, that I was "alert".

Made me feel good as I accept his opinion about things like that as one that comes from a guy who is well qualified to make those kinds of judgements. (Phd).

That's about it for today. Nothing too humorous except to say that I am T minus 10 days to the end of radiation on a daily basis. Feelin' great. Think it's been 11 days since nausea, head ache etc. Rollin right along and lookin forward to hittin the last day of chemo on the 18th. I know that there will be follow ups and MRI's and Cat Scans but they wouldn't be letting me go if I was eaten up with it.........if you know what I mean.

Stan, glad to hear you made it through the brain surgery. Knock em out!!!

Ooooh Raaah!


Sr.