Wow what a crappy 4 days

Damn- have I been feeling off- just not myself.  I wonder why......

Yesterday I was in bed by 7:30 and I have had a vicious circle.....I have had a cough, which wakes me up, so I haven't been sleeping.  Today I am going to Indianapolis- to see a concert with Deanna- yes Dierks Bentley for any country fans.  Based  on the last few days I really wondered if we were making the trip.  But yesterday I had sleep- thanks to brother Jim getting me drugs to kill the cough.  I feel so much better than the last week- butt just a little activity kind of runs me down.

I will be starting the new drug within a few days.  Its a simple drug to take- and hopefully it will help me get rid of the blas.

OK 2 posts in 2 days

Radiation anyone?  I guess my left hip had 2 much growing in it they were concerned of fracture.  So radiation is a palative measure to make sure I don't split my hip.  That starts in early Oct I am thinking.  I see the doc on the 8th.  I used that date as a time to take a break from work.

This is for any of my family reading this.  Where is kick the Taylor?

What a lost weekend

First- I went to the Northwestern Wildcat game- something I always wanted to do since I was a kid.  Went with buddy Steve and Scott- and Scot's friend who really didn't care for us too well April.  I enjoyed, went home- and I was useless the rest of the weekend including today.  When you have all these drugs interacting with you, they don't make the body work right.  That's all i need to say on that one.  I am feeling good to take the dog for a walk now.

Today at the doc- they took 20 X rays- damn that was a pain.  They don't take that many because I am extremely healthy- they take that many since there is stuff to look at.  Then after a nice chat with my doc- she suggested getting pathology  down to look at the cancer cells- i guess if its one characteristic of the cell- a chemo will do well and knock it out.  So I had 3 pokes with a needle in my neck. 

The alternative next step is a drug called Xtandi.  I know there are more "bullets in the gun", and the pathology will come back on Wed or Thur and go the next steps from there.  I read a long time ago the goal is minimal intervention- maximum observation.  Well- a bunch of X rays, bone scan, ct scan, and needle biopsy's, will give them the best information on how to proceed.  If the X rays prove snarky- they radiate the areas. 

I am an online support group for advanced prostate cancer, great information.  There is a doc who at 48 was diagnosed with advanced prostate cancer.  I will call him Doctor Brian.  He posted something that hit home- live for today, today is a gift.  If you think about it, its a gift for everyone who may be reading this.  And what was mentioned that people regretted working too much.  Last week at work was the first time I thought it may be best for me to step away.  Work on me, sleep again for 8 hours, and with less stress, my body should respond best to whats going on.  I asked my doc today, and she agreed to sign any papers to make that happen.  Work has become crazy- and its not making me healthier.  I am blessed with a generous benefit where they give you full pay for a number of months and most of your pay after that.  A couple months to recharge, especially if I need to get anything radiated may be best for me and my health.

I cant do a post without something weird.  I was in my dorm room at school, and funny how a 6 pack was involved.  This weekend it was just me and a 6 pack.  So what do I do, hmmmm.   Lets write a letter to David Letterman.  Dear Dave, I can eat 15 pounds of bologna in one sitting, sincerely Tim Ebert.  I actually had a stamp and mailed the letter......a few weeks pass....I get home from the Library- yes...the Library.....OK the bar....who knows, it was college.  I turn on the TV for Letterman, Viewer mail, and there it was......his answer, you need to eat 20 pounds, you will look better, you will feel better and have a better outlook on life.  With that my dorm floor had excitement, some guy ran down to shake my hand, he only had his underwear on.  I was a hero on 15th floor Tanner Hall.

Medical News- not good

From my doctors nurse

I know you are aware of your rising PSA unfortunately. This means we will not go on with the Taxotere chemotherapy. Your bone scan and CT scan do show disease progression both in the lymph nodes in your abdomen/pelvis and in your clavicle area. The bone scan shows some worsening disease in the femurs and right tibia (the thigh bones and shin bone). Because these bones are large weight bearing bones, Dr. Gaynor would like you to have x-rays the day of your visit next week just to make sure you are not at risk of an impending fracture. You can come early before your appointment to get the x-rays done. I am canceling your chemo appointment but please still do blood work for the appointment. Dr. Gaynor will discuss starting another oral hormonal therapy called Enzalutamide-it works by inhibiting the testosterone in a different way than the Zytiga . It would be the same process to get the drug as the Zytiga was and you take 4 tablets daily just like the Zytiga ,except you don't have to be on prednisone with this medication. So don't take the steroids since we will not be giving you chemo.

So my job is to keep my head up and make sure as hell I do my part.

Happy Day

Pie Charts

Ok- sat and read stuff.  I have to be very educated with the next chapter, and I saw a pie chart in the book that I was reading which made me remember......

At Western Illinois University I took a public speaking class.  As I listened to what to do and not to do we were cautioned on humor.  The teacher stated basically don't do it.  So as I was sitting in class listening to the other speakers, and I was up the next day, I started to laugh.  I kept it to myself, but the professor caught on and shushed me.  You see, I needed to punch up my speech about how the military was spending $3000 on toilets, so I made a pie chart.  I went to the grocery store and bought a couple pies, and a black magic marker.  You wouldn't believe how well a black magic marker shows up on an apple pie. 

So it was my turn, I started, 5 minutes into the presentation I referenced my pie chart.  I kept going with a straight face- 15% went for this, 20% went for this, then some guy in the back basically yelled, hey that's a real pie.  It took a while for the class to calm down.  It was a real pie- I got an A for the speech, and I actually didn't eat the pie when I was done.

Happy Day.

Whats ahead

Saturday- and I feel good finally.  Yea!!!.   Since my lovely trip to the Loyola ER- with my fever spiking all over the place, and the last round of chemo, I feel like I had a 3 week hangover. 

I was asked a couple questions, by a couple people, what about surgery, what about radiation.  As someone on the non patient side, seeing my mom go through this stuff, my first thought, they know where it is, lets just cut it out.  Prostate cancer they really don't have proper scanning other than 2 places in the country to really know exactly where things are.  I go in for a bone and CT scan on Wed for them to have a good idea of where things are.  Basically a before and after shot of how I am doing, and if the chemo was doing anything.  The one marker- the PSA level that indicated disease progression, and I get that rechecked on Monday.  So its a week with scans- and blood tests to see where I am at- and how to proceed for my apt in 9 days.  It cant be good news because I have to go through this- but what is good is that I don't go long at Loyola where they don't monitor, and correct the course as needed.

So today I will have to catch up on everything that I have neglected for the last few weeks.  Life was better when my responsibilities were to watch the Beverly Hillbillies with brother Ted and go into the kitchen and make myself a peanut butter, hotdog, and syrup sandwich.  Brother Ted liked the Hillbillies, especially the episode when Jethro went to the park to bring a bunch of hippies something crazy to smoke.  Crawdads.  I wonder if Ted, later that night tried to smoke one himself, but they would be hard to keep lit.

Happy Day.

How to live a better life.....this should be interesting

How do you get hot french fries every time you dine?  I wish I remembered to do this while at the Tropicana Hotel when Deanna and I had an appetizer of Parmesan fries.....for $9 and they were cold.  Order them with no salt....and when they come to the table, nice and hot, and you want to put salt on them, there may be a salt shaker on a table for most restaurants.

The other item- park in the same spot where ever you go- you will never loose your car again. 

Last item- the mind travels.....you ever wonder about these people, they circle around the mall parking lot to get a close space.  They stop, put the blinker on, wait, wait, and finally the car pulls out.  They got a close space!!!!!  And then they will walk 5 miles in the mall shopping.  Park far away, you may even burn a calorie.  And you will get your shopping done before the person finds their perfect place. 

Happy Day.

Happy Sunday

6:45 AM- I am high on coffee- will be going to the Bears Game later in the day.  What does tomorrow bring?  I started to do research on the 2nd line chemo and the 2nd line hormones to take, and it will be a few months before I see results.   Before it will get to a therapeutic level.   So my PSA will continue to rise, my body will continue to do things that I don't want it to do.  I am over 5 years into this thing now, and I cant complain about the quality of my life in the last 5 years.  Friends "forgot" I had cancer.  That's how I was doing.  But this thing stayed with me- (I knew it would), and it will eventually get me.  1 year?  3 years?  4 months? 

For some reason at work I brought up the subject that if I were being executed today, what would be my last meal.  Here we go:

• 20 toll house cookies
• 1 Original Recipe Kentucky Fried Chicken Breast right out of the fryer.
• Peanut Butter cup pie from Wildfire.  (Homemade Reese's Peanut Butter cup)
• Burned Garlic Bread- Thanks Mom
• 1 pint of Ben and Jerry's Chubby Hubby Ice Cream.

So what is my obsession with Peanut Butter.  I blame it on my sister- lunch time on family trips in our van- peanut butter and bologna sandwiches.  Good for me as a kid- sounds disgusting now.

Catch up to now-

I thought I would try something through a site called care pages.  I posted some items, and the goal was it was mainly for me.  Just try to work through some things in my mind, and have a reference to how I was feeling.  Also it was hopefully going to give an ability to share how I am doing one time, not multiple times to multiple people.  I know people care, and I do owe them a progress report.  Care pages had a problem though- a log in.  That proved to be a barrier to most.  Quite honestly I don't blame them, there are different log ins for everything, and time for me to make it easier on people.  So this is how.  Below is Carepages up to now:  I am going to delete care pages and please check on my progress here.

Oh ****

Posted Sep 4, 2014 8:06am

I haven't posted for a while, no news is good news? Hmmmm. Lets see. Today I am done with my 4th round of chemo, but my PSA went from 32 to 75. That shouldn't be happening. I have been responding to everything, and I fully expected to respond to this. My body was telling me I should respond to this. (there is a time while on chemo that the body just tells you ick, that lasts a couple of days.
This last cycle had some complications. One week after the last cycle, my buddy Scott decided what it would be like to visit the ICU. He is ok now- this congestive heart failure thing is not a good hobby to have. He needs to change things, will be on medication for quite some time. A wake up to see him on a ventilator. My guess is that I saw him during a time when I was at my lowest, post chemo treatment, and I got sick. So I played the Tim- lets have a fever game. On Friday within 2 hours it went from 100.1 to 103.5. With that- on to the ER. Nothing bacterial, so I spent a few days in bed and I kicked that one.
My diet is spot on thanks to some angels in Florida helping me with Seattle Sutton. I am a vegetarian....at least that's the food I am eating. It is the best thing for prostate cancer.
Where do we go from here, I get a repeat PSA in 2 weeks, repeat imaging in 2.5 weeks, and plan b in 3 weeks. Either 2nd line chemo or some other oral hormonal drugs that have been recently approved. I will keep this updated. What was weird, I was feeling really good....
Oh ****.

90 Seconds

Posted Aug 8, 2014 6:51am

Ok- what can you do in 90 seconds. When I grew up mine and brother Jims room was a disaster. And we had to clean the darn thing. Who knew, a clean room. I have experienced it plenty later on in life but not so much early. So how do we tackle that one. So we played the game, 90 seconds. Each of us took turns and tore around the room and cleaned up, while the other counted to 90. Darn you can get lots done in 90 seconds. I sometimes think of that when I am avoiding something at work. 90 seconds later the darn thing is started.
Why mention this on this forum? For the last 5 years, I have been not wasting my time, not getting involved with nonsense. I read early on the advice, what does it really matter if you are right about something. People argure about the stupidest things. At work I was recently involved with a couple things that were clear nonsense. The tires were spinning on the car, but we were not getting any where. And people wanted to argure their point. If you ever see me at work when someone wants to do that with me- i run the heck away. Its not worth it. And then I go back to my desk, think if they only spent 90 seconds they would get the thing that they argued about done, or at least they would get their room clean.
Happy day.

What goes into someones mind

Posted Aug 5, 2014 8:36am

Here is what the guy feels when he knows what he has is incurable. Fine- they are giving me things to help, but at the end of the day this thing is going to get me. I still have options, sure. But I am closer to the end of the road not the beginning. I am at the 5 year point from cancer that has spread, not bad.
So to address what goes on in my head. We are having layoffs at work- the work is being shipped to Guatemala. I am very interested in the time frame. I am good for 3 years at least. Cool- that's probably enough. I wont have to try to find other work.
This summer is going to come to a close. I remember my mother looking at our garden and said this is something I am going to miss. She was taking it all in. She was gone a few months later. So is this my last summer, probably not from what I have read. But I am still appreciating things as if it was.
People mean well, they do. It isn't a good thing to talk about, and it reminds them of their own demise. I have heard lots of things from keeping a good attitude, look at alternatives, that I will live a long life but with lots of drugs,and people are praying which I appreciate. The crazy thing is how can a person I see every day who looks normal be in this much hot water. Well, that's my life now. Sure, there are many drugs coming out, things that can help, more treatments to try, but this thing is going to be with me.
So what is going through the guys mind. Have fun today, enjoy life, and in back of my mind, I wonder when everything is going to go to heck.

Saturday the week of round 2

Posted Jul 26, 2014 12:05pm

I feel pretty, oh so pretty, so pretty....ok- not so much......
I figured out how this is going to go for me, first couple days not bad, so strung out on steroids, I feel like 100 bucks. Not a million, a hundred. Then no more steroids, ****, that's a come down. And there is pain in my "spots" that lasts a couple of days, and then time to recover for another round a couple weeks later. That's enough of the depressing stuff. Better stuff ahead

So where am I at

Posted Jul 24, 2014 7:14am

Home on the computer- of course. Ok- where am I really at- Done with the 2nd round, it beats you up. This is probably the first time I am mentioning this number PSA- 30. That is the score card. If the PSA gets to 10,000, Tim is sleeping. It has been as low as 0.05 and as high as 52. With Loyola they don't let me stray long before they go to the next thing. For that I am grateful. The doubling time of my stuff since I am a young guy is quick, so without the extra medicine, if the chemo wasn't working, I would really be feeling it some days. And I am not. While I am not feeling outstanding, there are days which are totally normal, and I feel actually a little better.
For now I provided shared this with very few people. Thanks Summer for the comments. And I know some people, probably even Deanna got frustrated trying to get on, they gave up. So for now this thing is mainly for me. At some point I will expand this. But for now, if you are reading, thanks.

2nd Round in the Books

Posted Jul 22, 2014 5:44am

****- thats not a good place to be. And to look around that room knowing that everyone in there is in trouble. A few may be looking at cures, good for them! A few is the last shot at a losing battle of an agressive cancer, and a few (me) is a pallative attempt to knock this thing on its toes for a while and keep it at bay. When my cancer is awake, its aggressive as hell, so lets knock it down and keep it sleeping. Mine is resting in bone. Ribs, pelvis, and shoulder....probably other places, but not too many. Some get it in the skull- thats nasty. Its 4:40 in the morning, they give you steroids, so **** I am awake. But they do give you stuff not to throw up and make you sleep. The pharmacist knows my name.
The hair is gone. Tim- its been gone for years.....ok the rest of it. I was shedding like a cat, so Deanna know shaves 3 animials, me, Lisas pussy, and our pussy Marcus. Deanna has never set me a picture of her shaving Lisas pussy, but at least Lisa buys her drinks.
Thats it for now. Chemo sucks....but I guess the 2014 version is a whole lot better than the nonsense my dad had to do in 1988.

7000 Calories Later

Posted Jul 18, 2014 7:00am

Ok- with this stuff- you don't eat as much- so I am going to fit into my skinny jeans by summer or wear some daisy dukes. Ewwwww. Now that would be a site. I will go again for round 2 on Monday, and they will smile at me and offer me a sandwich. When I was there the first time I am thinking, cool- (Jimmy Johns, Subway, at least the quality of 7-11), and they happily brought me 1/2 of a ham sandwich, wonder bread- no condiments, and a piece of hospital ham. What else can fill your time, so down went the hospital ham. Prior to the end of the 3 week cycle, my appetite is better and we sat on the Aurellios patio with my friend Joe. It was a buffet and you can eat what you want. So me being a 5 year old, I selected on one trip up 3 pieces of pizza and a chocolate chip cookie. I enjoyed the weather, brother Jim and Deanna were there as well. They left the cookies for later. So my daisy duke friend Joe- 3 plates, must be north of 7000 calories. The guy must have a chambered stomach. He must save the stuff for later in one of the chambers.... not to say anything bad, I guess we are both built differently. Then I wondered how Joe would have done with the hospital ham. Why do I call him daisy duke Joe- he wore shorts for a while until friends of his had enough and I think they burned them.

Best if used by

Posted Jul 15, 2014 6:05am

Yes the mind does go there. Its an expiration date. On my I-pass it says 2022, and immediately I thought **** that thing will still be working long after me. Then I look at the darn salad from Wal-Mart that I am going to take for lunch today, it expired 7/14. So I guess I am better off that a salad but not as good as my I Pass.
People have different expiration dates. I have come to grips with that. I guess mine is sooner than others. So here is what that gives me. Each and every day I appreciate things that I have, the people I have in my life, and the experiences that I have. Who knows if this thing is going to give me 5 more months or 5 more years. I am just grateful that the doctor gave me the PSA test that was not warranted for someone at my age. That is why I am 5 years down the road on this thing. If I didn't go to that doctor, for my physical, (not my main guy), I am sure it would have spread more, and I probably wouldn't be here.
So while I am here, time to have as much fun as I can, and appreciate the life that I have.

That was easy?

Posted Jul 2, 2014 8:31pm

Hmmm. See what the body does. Not bad...but god bless the pharmaceutical companies. Appetite has dropped. Who needs weight watchers.
The initial side effect is fatigue... But that's what coffee is for. I was told by my boss today to eat an apple...coffee inst good for you. Nice thought but let's live it up. I am thinking meth.
See ya.

Chemo tomorrow

Posted Jun 29, 2014 7:33pm

On the first day of Chemo my true love gave to me- a beer. Lets see if she can sneak that one in.
On the second day of Chemo my true love gave to me- by then we should have a dog- we are going to name it Kameer. I really want to confuse the thing. Come here Kameer. Lets see how that goes.
Chemo is one day on- 20 days off just as long as my blood cooperates. I have had chemo drugs before but at this point I graduated to the heavy stuff.
On the third day of chemo my true love gave to me- thats a good question. By then my hair will be gone, (all of it), and I will either gain weight or loose weight, be normal or be fatigued, be constipated, or have the runs..... So my guess is that Deanna will be a drunkerd, so if I log a cry for help- please come help her.....she is the one that will need help- having to put up with me going through this crap.
I am going to work through it, that was upon advice from my doc. But we will see how that goes as well.
Thats all. Lets see how often I post on here. It may be a good diary to tell the doc when I see her, but if there is crap going on, it saves anyone from informing everyone, so please check here first.
Happy Day.