Is there anybody out there?

So how do you like the new layout so far? It's not much but I'll continue tweaking it as I go along.

The picture up top is of my desktop here at CroakerJoe central, in case you're wondering.

Does anyone actually read this thing or am I just blabbing to myself? Comments are definitely encouraged :)

Maybe I should say something outrageous and see if anyone bites?

In other news.. I begin my Whole Brain Radiation treatment on monday. I'm still a little apprehensive about it but am resigned to it. With new lesions popping up every month like bad pennies, I guess I'm pretty much out of options.

If this doesn't work, I'll still be able to go back and do more targeted radiation zapping if need be so I ain't done yet...

Messy Boy

"I've been uptight and made a mess
But I'll clean it up myself, I guess
Oh, the sweet smell of success
Handle me with care"
~ Traveling Wilburys

Here I am in the Santee Library again.. my new hang out. It's nice & close by and I could walk to it if need be.

For some reason, I find sitting in here better for thinking and writing that sitting at home. Less distractions I guess. Only bad part is that there is no nearby caffeine pusher to feed my habit. That's just as well, I guess. I'm jumpy enough naturally these days.

So tomorrow is a big day for me. Going to see Dr. Smith, the Radiation Oncologist to hopefully find out the whats and whens regarding my treatment. I am assuming they will still want to do the Whole Brain Rad. but don't really know. Since there have been other developments, they may suggest more targetted treatment for all I know. I would prefer that but don't really relish the idea of going up to Hollywierd again.

I'ts more likely to be WBR THEN SRS if needed.

I feel pretty good.. about as normal as I ever do these days. Of course, I'm doped up on Ativan to keep me from getting the heebie-jeebies. My thoughts feel pretty clear though, which they have not been lately.

I think I figured out whatI was trying to say the other day with all the death-talk...

It's not so much that I'm fixated on my own demise.. I'm certainly not suicidal or anything like that; I rather like being alive, even when being alive sometimes sucks, as it does for all of us sometimes.

But I would sor of like to know what some of my doctors feel my prognosis is. I have not asked. I know it's not very promising but I also know that it's not as bad as many folks out there have to face.

As someone on the List said recently, milk has expiration dates - people don't. So any answer I got would be taken by me as a challenge to prove them wrong by outliving my expiration day.

But having some idea of what to expect, in general, would be helpful to me because it would effect my actions in a dramatic way. If, for instance, I were to be told that I am not likely to be around a year from now, I'd work a lot harder at enjoying what I have left and at fixing some of the problems I'd like see fixed before I check out.

If they believe I have longer, why then I'd feel less urgency about these things - though I still need them fixed. I have a fair share of messes to clean up before I go, if you know what I mean.

He's Gone...

R.I.P. Murphy

?/?/1993 - 05/24/2007

He was the best dog we ever knew...










Good boy, Murphy!

Good bye, old friend...

Lazy

Here's another cut n paste job from my latest List post...

---snip---

Last night, one of my onc docs called me back late in the day and insisted that I increase my steroids back to near my original dose.

I can't remember everything she said but apparently, I have "a lot going on" with new growth in my brain and this is the only way to control it until I enter treatment (whatever that turns out to be..) I assume she meant controlling the swelling seen on my MRI last week.

I am pretty disappointed because I had been scaling back my dose (under doctor's instruction) and only had a week to go before I'd have been off them completely, even if only for a short time... I really hate taking those things.

Still, I have to admit that even though I've been feeling fairly good lately, I can already tell that my mind is clearer after only 24 hours on the higher dose.

I am still waiting for the written report from the MRI as which time I'll have a clearer picture of just how bad my new situation is. I get the feeling, judging from the way the doc relayed the news to me that I'm in a bit of trouble this time around.

The odd thing is, over the last week or so and with a few exceptions, I'm feeling better than I have in several weeks

Oh well, back to the drawing board...

---snip---

Dog Years

"In a dog's life
A year is really more like seven
And all too soon a canine
Will be chasing cars in doggie heaven

It seems to me
As we make our own few circles 'round the sun
We get it backwards
And our seven years go by like one"
~ Peart

A sad day has come.. Our dog, our friend, protector and companion these last 13 years has reached the point in his life where the kindest thing we can do for him is to put him down.

His name is Murphy.. we usually just call him "Murph". He's been the most gentle, smart and fun dog I've ever known.

We have an appointment this Friday to have the vet come to the house and take care of it. I haven't cried yet but I know I will.

My wife is already extremely upset. Though it hurts for Jason and I, I think that for her, it is nearly the same as losing a child. She just lost her mother last year and if you've been paying attention, you know my own situation.. She is an amazing woman, stronger than I ever would have guessed but I worry about the added strain.

Murphy has had something called Hip Dysplasia which is something like arthritis for dogs. It's so bad now that he can barely get up to eat without our help. He also has several other problems and basically has very little quality of life remaining. You can see that he is in pain much of the time and he's sleeping when he's not.

This should have been done months ago but it's taken a while to convince Dianna that it really is the most humane thing to do for him now. But she has finally accepted it so Murphy will be leaving us this Friday.

A very sad day indeed.

Good dog, Murphy.. may you find an endless supply of lizards to chase and faces to lick.

Blah, blah, blah...

"It's nature's way of receiving you
It's nature's way of retrieving you
It's nature's way of telling you
Something's wrong..."
~ Spirit

Hi there...

Sorry I haven't been posting lately. I had sort of a bad week last week, mostly due to the damned steroids, I think. I've been steadily reducing my dose, trying to get completely off the damn things before I am forced to go right back on them when they start up the Whole Brain Radiation.

I can hardly wait.

I've been awake since 2 AM. Although I am an insomniac and am often up at hours like this, it is intentional this time. I have to take an EEG test at 8 am this morning which means I will need to be able to fall asleep in the doctors office. This is so they can study my brain waves as I sleep.

I'm not certain what they hope to gain by doing this but what the hell, I'll play. I just hope I can fall asleep when they want me to.

So this new Doc I have seems like a good one. She's a neurologist and is checking me for seizure risk originally but now has taken up an interest in my entire case. Apparently, one of her specialties is brain tumors, mostly primary ones but she is, she says, knowledgeable about metastatic tumors as well.

Perhaps because she noticed that I didn't even have a doctor lined up to follow-up my upcoming MRI, she has sort of taken me under her wing and will be reviewing the MRI results with me next week.

It's sort of comforting to finally feel like someone has taken specific interest in my case and I am very grateful to her for that. But she's a very direct, no-nonsense doctor and our visit left me thinking a little more seriously about my condition and prognosis.

All this has led to me getting myself into a not-so-good state of mind. I feel like my health, both mental and physical, is declining. But then I wonder.. is the way I feel from all the drugs they have me on? The steroids? (I'm nearly off them for now - taking a very small dose and will be completely off them in another week or so. Just in time to go back on them when or if I start the WBR treatment).

I seem to have more mental fogginess, I feel weaker physically.. more headaches. My new Doc says some or all of this could be a direct result of just being a person that has cancer and brain mets. But there's no way to really know. I could be a mixture of all of the above. Much of it might be depression - you know, thinking myself sick again.

Whatever it is, I don't like it. The end result is, I'm spending way too much energy and time thinking about my own death..

Am I dying? Eventually, of course. But more and more, I get the feeling that it may come sooner than anyone, including myself, wants to admit. I've learned too much. I know what my odds are and they are not good.

But the small part of me that wants to be more optimistic knows that anything could happen. I know that there are people out there that have lived on with worse odds than I have. I also know that all this death-talk is not helping me at all and I want to knock it off. It is not an easy thing to do though.

Screw this. I have no idea where this post is going now, though I knew when I started out. I sure didn't mean for it to become so depressing. I think I'll stop now and hope that my original idea comes back to me because this is not what I started out to write about today. I didn't intend for it to become such a bummer, as we used to say back in the '70's.

I'll try to come back to it later...

More changes coming..

Never fear, a whole new look is coming. I'm just slow.

By the way.. I hope I haven't completely alienated anyone that actually reads this blog by exposing more of the "inner me" that is usually not evident in the other places I post.

Yes, I'm opinionated about certain things and occasionally profane but really, I'm not as big an asshole as I probably seem.

Anyway, you can't say I didn't warn you :)

No song lyric quote today....

Well, this sucks. I had been reducing my steroid dose and only had a little over a week to go before I'd have been completely off them.

But last night I began to get a headache. I tried to ignore it. To blame it on a stiff neck.. but by this morning it was still there and getting worse. I took my daily walk at around 11:00 and by the time I got back, the pain nearly had me in tears..

So we called the doc and they said to increase my steroid dose again. So I popped one then and there and started feeling better within 30 minutes or so. It's been about an hour now and the headache is nearly gone.

So I guess I still have some swelling in my brain after all.. I am not certain what the implications of that are but I doubt it's good news.

Fuck.

Computers Suck!

"Let's face it, the average computer user has the brain of a Spider Monkey."
- Bill Gates

They really do. Suck, that is....

Do you speak Geek?

I just spent the better part of 3 days fighting with evil computers, rat's nests of tangled cables, burned out power supplies and unnecessarily complicated Microsoft silliness.

See, my power supply fried which caused my hard drive to crash which scrambled all my data thus making my email inaccessible.

Ok, so no biggie, right? A quick run to the local Geek Shop for some parts and I'd be back sending out annoying emails and goofy blogs in no time. Think again... I forgot to take into account that my poor old brain just doesn't work like it used to. You might say that the data on my internal bios is a little hosed... and my memory ain't so hot either.

Random Access indeed...

I'll spare you the gory details but to make a long story short... I got all the hardware installed without incident. Got Windows installed and updated with all the hundreds of security updates, service packs and some other weird stuff which I don't even know what it does but I apparently need.

It wasn't until I began trying to restore all my important data that things began to go haywire. Backing up and restoring data is a normally simple procedure that soon had me cursing the day Bill Gates was born, gnashing my teeth and staring numbly into a blank monitor for minutes at a time.

All my emails, medical records, financial records, passwords and on and on... about 20 years worth.. all gone. Well, not gone exactly - the data was still there on the disk, I just couldn't seem to get it back into my system in a usable form. It should have been simple.

For 8 hours, maybe more like 12, I read articles and FAQs and expert advice from an army of Windows gurus, following intricate instructions to the letter, all just to get my email program to be able to see my emails again. Nothing worked.

Around midnight, after having struggled mightily on this one problem for the whole day and night, I ran across a few lines of simple advice from some anonymous guy on the web, an amateur geek like me. Just like that, problem solved. Once I knew what to do, it took me all of 5 minutes to finish the job.

But I'm finally back up and running and, much to my surprise, I only spent 74 bucks. I must have done something wrong.


I'm not sure there is a point to this story except maybe to point out that as miserable as I make it all sound, I was secretly enjoying myself. Even before all my cancer woes, getting myself all caught up in a computer problem or project was an enjoyable experience even when it started edging from interesting to annoying to frustrating.

Now days, I figure that being distracted and annoyed by inexplicable and mysterious computer problems is more fun than being depressed and anxious about cancer.

Besides, maybe it will help keep my brain from turning to mush.

So with all that in mind and now that my system is working well again, I've decided to start 2 new projects.. First, I'm going to redesign this Blog (to go along with the new name I'm trying to come up with).

And, for a bigger challenge, I'm going to turn this older system that I have laying around into a file server for my network using Ubuntu Linux.

I guess I'm just a glutton for punishment but hell, it beats sitting around worrying about being sick.

And for now at least, I've got nothing but time....

Toys!

"Money, its a crime.
Share it fairly but dont take a slice of my pie.
Money, so they say
Is the root of all evil today.
But if you ask for a raise its no surprise that theyre
Giving none away."
~ Pink Floyd


Maybe I'm a selfish and greedy person.

No, I *am* a selfish and greedy person.

Every time I get to feeling sorry for myself I run out and buy myself someting, usually some new toy. Unfortunately, I like expensive toys - electronics, mostly.

So since coming home from the hospital with a hole in my head, I've bought an Xbox 360 (400.00), several computer and xbox games (200.00 or so), various cables and accesories for the above (150.00 or so)

Today, I'm going out to buy 2 new hard drives because I'm having trouble with my computer and replacing the drives is the easiest way to get out of the mess even though I could probably fix it myself without buying anything given enough time and patience.

I justify it by telling myself that I need to get my system working well while I still can in case I atart losing my marbles from my up-coming radiation treatment.

But I do feel guilty because my loving spouse is in a vulnerable state, as strong as she is and I could probably talk her in to letting me buy nearly anything right now. I'm not deliberately taking advantage of the situation but yet I continue to buy things (Oh yeah, I forgot that copy of Windows Vista - 100.00) (BTW, if you are tempted to upgrade your computer to run Vista, I'd advise you to hold off for 6 months or so while they fix all the bugs - it sucks right now in too many ways to list here).

I'll try to stop buying myself things after this. I promise!

I'd rather be dead--I'd rather be dead
I'd rather be dead than wet my bed
I'd rather be dead--I'd rather be dead
I said dead than wet my bed

Oh, I'd rather be gone--Than carry on
I'd rather go away--Than feel this way
Oh, I'd rather be there--Where you haven't got a care
And you're better off dead--Though it doesn't seem fair

Oh, I'd rather be dead--I'd rather be dead
I'd rather be dead than wet than wet my bed
I'd rather be dead--I'd rather be dead
I'd rather be dead than wet than wet my bed

(Laidies)
I'd rather keep my health--and dress myself
But you're better off dead than sitting on a shelf
(Men)
I'll tie my tie 'till the day I die
But if I have to be fed then I'd rather be dead
And when he takes my hand on the very last day
I will understand because it's better that way

Oh! It's nice to be alive--When the dream comes true
You'll be better off dead--It could happen to you
Oh! I'd rather be dead--I'd rather be dead
I'd rather be dead than wet my bed
I'd rather be dead--I'd rather be dead
I'd rather be dead than wet than wet my bed
(Alright! Give yourselves a big hand!)
[Clapping.]

~ Harry Nilson

"And you may ask yourself
What is that beautiful house?
And you may ask yourself
Where does that highway go?
And you may ask yourself
Am I right?...Am I wrong?
And you may tell yourself
MY GOD!...WHAT HAVE I DONE?"
~ Talking Heads

And I ask myself, how did I get here? Oh, I understand it well enough - the paths I took, the choices I made.

I often wish I could write it all down, just for the record or, who knows? Maybe it would help someone. Maybe someone important.

Maybe not.

One day I might even have even been able to do it, to write it all down. I used to dream of being a writer, you know. I even began trying several times over the years with varying success but like so much else in my life, it mostly ended up as, to quote Mr. Pink Floyd, "..plans that either come to naught or half a page of scribbled lines...".

So how did I get here? Maybe I had a little help - a push here, a tug there. But essentially, I brought myself here. There is no one to blame.

I have regrets, I have shame, I have lessons ignored or missed entirely.

Never fear, it's not ALL bad news. I also had my glories, my joys and plenty of good times.

Wanna know the one thing I would say that was my biggest mistake though?

Here it is: I spent, perhaps the first 3/4 of my life under the mistaken belief that nothing mattered.

Nothing. Nothing I did, nothing I said, nothing I believed... none of it.

Boy was I wrong.

I'll try to explain it better here later if I can but if you ever find yourself thinking that nothing really matters, please disabuse yourself of the notion right away and it may save you a whole lot of trouble.

Everything matters.

Everything.

Oh and by the way...

R.I.P. Kurt Vonnegut (So it goes...)

I'd be kicked out of the NFL for doping right now...

In the interest of keeping up to date here is the latest and greatest but because I'm also feeling lazy, it's just going to be another paste job from my recent List post regarding steroids... Enjoy!

--snip--

I didn't have a very good week since my SRS treatment.

Once I got home, I found that the steroids they had me on were making me very aggressive, easily angered and downright nasty.

Since, as usual, the docs at Kaiser barely spoke to me, I had no idea what to expect. It started causing so much trouble that I had several huge fights with my wife (even after nearly 30 years together, we rarely fight or even argue) because neither of us understood what was happening. I guess she thought I'd just turned mean on her.

Well, we finally figured it out and the Doc said I could try going off the steroids but of course, as usual, never giving me any real idea of what to expect by doing so.

So I weaned myself off the steroids over a period of days.

The agressiveness went away almost immediately and things seemed to be returning to something closer to what passes for normal for me these days...

But by the 3rd day, I began feeling horrible. The headacges came back, the mental confusion, anxiety and panic attacks.

Thinking things were OK, Dianna had been trying to go back to work but by the 4th day, I was so weak I could barely walk, my field of vision and the confusion had forced me to voluntarily give up driving again. I was crying and shaking - a complete train wreck.

I was convinced that my brain mets had grown or multiplied. I thought I was dying.

So last thursday, my wife had reluctantly gone in to work but after a few hours, I called her to come home. I was so messed up, I could barely speak.

We called my local onc. and he says something like, "oh yeah, we were concerned that you might not tolerate being off the steroids.."

Well thanks a lot for letting us in on that little detail, Doc!

So, I went back on the steroids and felt better again within 24 hours. It's been 3 days and so far, there hasn't been too much problem with the aggression/agitation.. just 1 or 2 minor flare-ups and now that Dianna understands what's going on, she's learning to simply ignore me if I start acting like an ass**** and that helps.

I also stay pretty doped up on Ativan and sleeping pills at night and that helps as well. Though I hate like hell to take those types of drugs, it seems I have no choice now.

I am also getting concerned about side effects from the steroids, especially after reading up about them in the archives here. They have me on a pretty high dose.

I also understand that being on steroids can keep me from being treated for my lung mets, at least as far as IL2 is concerned. I'd appreciate any insights in regards to these last 2 paragraphs..

Anyway, that's the story so far... I have a appt. with Dr. G in Riverside in a week or so and will hopefully learn more then.

Keep fighting, RCC Warriors!

--snip--

Beauty

That's what she said she found on the morning of her young husband's death. 42 years old, he was, with 2 school age children and a wife, even younger than he.

It was only about a year from the time he was diagnosed with renal cell cancer to the night he died. His wife is my new hero. She stayed with him till the very end, barely taking time to rest, less she miss one of those ever more rare moments of lucidity where she might snatch a kiss, a look, a smile.

She did all this while continuing to teach and raise her two young ones.. and to try, somehow, to make them understand why this ugly fucking disease was slowly taking away their Daddy.

This was a hard one.

At the end, she said his passing had been a beautiful thing.

I will always remember Sarah and Chris who found beauty.

God damn this disease forever.

"It Came From Hollywood!"

Well, I'm back from Hollywood. What a depressing city that is, especially near where the hospitals are (there are so many, mostly Kaiser hospitals there, I call it Hospital Row.. it's like the Las Vegas strip sick people.)

Got my brain zapped in 3 spots. I don't know if it's had any effect on me or my thinking. I do feel sort of odd but that may be just due to stress and so on.

My advice to you is avoid getting a brain tumor if you can. It's not really all that fun.

You raise the blade, you make the change
You re-arrange me 'till I'm sane
You lock the door
And throw away the key
There's someone in my head but it's not me.
~ Pink Floyd

So just barely a month after my surgery, I've already got more shit in my brain.

That didn't take long, did it? That is pretty fucking fast if you ask me.

My son asked me if my religious views have changed since all this cancer nonsense started. I had to tell him, no, I'm still the same old unbeliever I've always been. I'm not an atheist, exactly.. I just can't seem to bring myself to believe in god simply on faith alone, no matter how comforting it may sound. He's going to have to show me something if he wants my vote.

If he wants to punish me by sending me to hell or whatever for feeling that way then so be it. I can't decide something like that based on a threat.

But I'm not anti-religious and I'm willing to admit that He could exist. I just doubt it a lot.

Anyway, it looks like I could be finding out the truth much sooner than I'd like.

It seems they've found more lesion in my brain.. as many as 4. Two for sure and two more tiny "maybe mets". This is some scary shit.

But I'm not really afraid of dying, exactly. Oh, I'm plenty scared of pain but being the old agnostic that I am, oblivion sounds kind of comforting. All worries gone for good.

But I don't want to leave my loved ones sooner than I normally would. Most of all, I don't want my wife, the love of my life, to be all alone.

No, what I'm personally afraid of more than anything is of something happening to my mind. This is why I've decided to refuse Whole Brain Radiation - I'd rather be dead than sitting here mumbling and drooling on myself. (That's an extreme, over-stated example - I know most patients that do WBR do not get that bad..).

Still, the whole idea scares the crap out if me.

So tomorrow we are heading up to Hollywierd to find out if they can zap my brain mets individually with their Novalis machine. We were unable to talk Kaiser into sending us to UCSD for the treatment, unfortunately. (the bastards).

If they succeed in getting control or eliminating the brain mets then I can start thinking about getting my lungs treated.

Cancer Sucks!

"I need all the peepers I can find
cause I'm the harvester of eyes..." ~Blue Oyster Cult

I'm feeling halfway decent these days. Still having trouble with certain things. Typing is still difficult.. when I look over what I've typed, it's often so bad that even the spell checker doesn't know what to make of it. I do things like type an entire paragraph and then realize I've been typing "g" in place of "m" with results like, "Gy Gother picked up a gallon on gilk while she was at the garket" (My Mother picked up a gallon of milk while she was at the market).

Needless to say, this yields some pretty comical gibberish. Sometimes I don't notice for several paragraphs but I'm learning to stop and reread often. This makes writing take quite a long time but hell, what else have I got to do with my time?

No news on the medical front. I had the brain MRI yesterday and will get the results next week. If it's clear, then I'll be heading to see Dr. G after my ct scans, also next week, these of my torso or CAP (chest, abdomen, pelvis).

I imagine I'll find out then what comes next - lung surgery, IL2 treatment or whatever.

I saw the optomologist (sp?) 2 days ago and saw a graphic that shows my vision loss. It looked something like this:


The blackened out sections represent areas where my vision is completely gone. I reckon that's a loss of about 50% on the right and, what, about 20% on the left. This is most likely permanent, I'm told.

It seems pretty band when you see what I've lost on paper but really, it's not all that bad. I can see as well as before in the unaffected areas, as far as I can tell and that's really not that bad.

I've even been driving a bit though the Doc advised me to be very careful and to stay off the freeway. But at least this will mean that I can return to work at some point, hopefully. Though I doubt I'll be able to do my old job.

--snip--

I may have mentioned this before to you but I'll say it again though it's a painful subject, to say the least.

I have been the worst kind of fool. I kept smoking long after I knew what it was doing to me. I had severe bronchitis, near pneumonia several times and still I smoked. My wife quit and begged me to quit too and still I smoked. That was 20 years ago when my son was born.

In 2004, I was diagnosed with kidney cancer and, much to my shame and embarrassment, still I smoked.

I was sneaking around and hiding my smoking like a teenager smoking in the boy's room at high school. I was 44 years old.

I was very embarrassed and ashamed that I was still smoking and I imagined that no one knew. Of course they knew. You can't hide that smell from a non-smoker no matter how hard you try.

People were polite enough to pretend along with me though, for the most part.

2 years later they found the nodules in my lungs and incredibly, still I smoked.

Every night I went to sleep in fear and swearing that I would never smoke again - every morning I would eventually go buy another pack. Sometimes I'd fight it for a while but most often I didn't even bother to try. I felt hopeless.

There were periods of not smoking as long as a year or more spread through out this story but I always ended up smoking again at some point.

On my tombstone, they should just put up a drawing of Joe Camel.

When they told me they needed to cut my chest open to do the lung biopsy last month (or was it 2 months?) I quit again for perhaps the hundredth or maybe thousandth time. I have not smoked since.

When the brain tumor presented itself in early feb. 2007 , I had been not smoking for barely 2 or 3 weeks. I have not smoked since but I am already getting occasional cravings and I am terrified that once I'm all healed up and feeling my old self (if that ever happens), I'll smoke again.

I don't *think* I will and I'm sure as hell not planning to but..... (Of course, if I ever do smoke again, I won't have to worry about cancer cause if my wife found out, she'd surely kill me herself ;) )

By the way, feel free to share this post with anyone you know that smokes or even if they don't, especially young people.

So did my 35 years of smoking cause my kidney cancer? There is no way to ever know. You can draw your own conclusions but I know what I believe.

Maybe if I had stopped after my original diagnosis in 2004, I'd still be sitting safe at Stage 1 instead of where I am today. Like a fool, I never believed that something this bad it could happen to ME and even if I had, it may not have helped because I was as addicted as any hardcore junkie is to his needle.

--snip--

"People with brain metastases eventually succumb to them..."

So says the esteemed Dr. Nostradamus. Dead man walking, in other words.

I don't know if he's right... he's the brain surgeon, after all, not me. But I don't feel like I'm dying. I feel like I'm getting better in many ways. I know that stage 4 kidney cancer is not going to just go away but I also know that some people outlive their dire prognosis by many years.

Brain Salad Surgery

So I woke up this morning at 3 AM with headache that was beyond belief. No, it didn't quite rise to the level of the headaches I had when they found the brain tumor but it was of epic proportions just the same.

Thank god for my friend, Mr. Percoset. I don't want to think about what it will be like when I run out of those.

More later...

Ok, now that that's done, we can talk.

First, a warning to anyone reading this - I don't plan to hold back much of anything. Some of what you read here may be upsetting in various ways, especially to any of you that are family members or loved ones.

If this concernes you, you may want to move on.. I post in several other places such as the kidney-onc List if you want to read my ramblings....

Otherwise, come on in....

My brain is fucked up. I can process out ok but input is hosed. I am facing trouble with reading and comprehension.. I am not only partially blind but have some confusion as well.

My thought process seems mostly ok aside from the occasional hiccup but please be patient with my spelling and logic.

What I've typed so far in this post. for example, has taken me about 20 minutes so far. Like I said, I'm all fucked up.

I don't know if my vision problems are permenant but it's starting to look that way. Time will tell.

Some that know me would be amused to know that one of the most distressing parts of this whole thing is that my computer gaming days may be at an end.

This with Vanguard having just released. (it's like World of Warcraft if you need a reference) All this and I'm crying cause I can barely play the video game I just bought.

If you spent as much cash as I have on computer hardware, you might cry too.

I'm needing a break now.. Will try to write more later.

Hello..

You may start hearing from me more now.. there is certainly plenty to talk about.

To start us off and to save time, I will simply paste from a "List" post which should serve to get us updated on the situation...


--snip--

Anyway, I got some more info today...

The tumor was, as expected, single Clear Cell met to the brain (the left occipital lobe), completely ressected.

I still have a 1cm and 1.8CM met one in each lung, growing but slowly. I had been in the process to scheduling the removal of the lung mets when the brain met was discovered and pretty much killed that idea..

Once treatment decisions have been reached for the brain, I will enter treament for the lung mets, most likely HDIL2.

I think that about covers it. I am not keen on WBR but have not ruled it out.

He also mentioned some sort of partial or targeted radiation but kept complaining that this went against "standards of treatment" and wold not recommend it.

He also said we could simply do nothing and see what pops up and deal with it as needed but was even more against this option. This option also scares my wife too much and will probably not be used.

We are seeing Dr. Gailani at Riverside Kaiser as well but I believe he is sort of staying out of the debate as far as my poor old brain is concerned but will be handling the parts of my treatments that are not part of radiology but I may be confused on this part.

Lastly, (and perhaps most importantly)we've decided to see Dr. Figlin at City of Hope for at least a single consult and 2nd opinion. We will attempt to make Kaiser eat this but will pay out of pocket if we must.

--snip--

Here we go again...

Well, they took some more pictures on Oct. 11 and this time, I was sure all would be well. After all, in August, when I was so worried, the scans came out as good news - no progression.

This time, once again, they are showing growth. From 8mm in August to 12X14mm in October. This is not a good thing but I have to wonder..

Last March, they said the largest nodule was 8mm. In June they said it had grown to 12mm. That's when I became concerned.. In August, they said it was stable at 8mm.

WTF? So did it grow, then shrink, then grow again?

Or is there variance in how the machine catches the nodules. I've read that there are though I can't recall the technical explanation at the moment. Also there could be variance in the way the radiologist reads the scans.

So is it growing or not? Who the hell knows. I have to assume that it is.

Fun stuff...

I'll find out on the 23rd of Oct. what, if anything will be done this time. As much as I dread things like needle biopsies and surgery or treatment, I'm gonna go nuts if I have to wait and wonder for another 3 months.


Cancer sucks!

So as it turns out, the nodules in my lungs had no growth this time around.

Good news for a change.

Of course, better news would have been that they'd shrunk some or disappeared altogether but as I've come to know, that is pretty unlikely.

Still, I asked Dr. G if there was still some chance that the nodules are something other than recurrent cancer and he said, yes. How much of a chance, I have no idea. At the previous dr. visit, he had said that it was possible but unlikely.

So it's back to waiting.. They'll scan me again in November. I'm trying to get my brain out of Worrying Mode and back into Living Mode in the mean time.

I'm tired..

Tired of being afraid.
Tired of not feeling well.
Tired of being angry.
Tired of being sad.
Tired of feeling like I'm coming apart.

Tired of my own self-pity.

So anyway.. here's some lyrics to a song from my youth that apply to a certain young person that I know...

Waiting for the winds of change
To sweep the clouds away
Waiting for the rainbow's end
To cast its gold your way
Countless ways
You pass the days

Waiting for someone to call
And turn your world around
Looking for an answer
To the question you have found
Looking for
An open door

You don't get something for nothing
You can't have freedom for free
You won't get wise
With the sleep still in your eyes
No matter what your dreams might be

What you own is your own kingdom
What you do is your own glory
What you love is your own power
What you live is your own story
In your head is the answer
Let it guide you along
Let your heart be the anchor
And the beat of your own song

You don't get something for nothing
You can't have freedom for free
You won't get wise
With the sleep still in your eyes
No matter what your dreams might be
~ Peart

As I approach the end of August, in which I will discover if my life is about to take a dramatic change.. I think I'll try to write in here more. I really need to get my head on straight.

Here's the deal.. In March of '06 on my regularly scheduled CT Scan, they discovered 3 tiny nodules on my lungs. There was a strong possibility that these were mets (metastatic cancer) from my original kidney cancer diagnosis (see earlier posts from '04).

But, said the doc, they could be anything, maybe nothing. So we waited 3 months for another scan. Well, on June 8, they scanned again and the nodules had grown. From 3mm to 8mm on 2 of them and 8mm to 12mm on the larger one. 35% growth.

Apparently, this seemed to rule out that they were harmless cysts or scar tissue because those things don't normally grow in size like that.

Doc said he wanted to wait another 3 months because they were still pretty small, perhaps too small for a needle biopsy. I then went up to Riverside, CA. for a 2nd opinion from Dr. Gailani who, unlike my local Oncologist, has at least some experience with RCC (Renal Cell Carcinoma).

Dr. G seemed to agree with Dr. Chen that watch-n-wait was the best course to take but seemed to understand my anxiety so offered to schedule me for a PET scan which might show the nodules to be cancer thus clinching the deal.

Here's where it gets funky though. According to Dr. G, a PET scan is sort of iffy, false negatives are common so while a positive result is heeded as reliable, a negative result is ignored, putting me back in watch-n-wait mode. In other words, a nagative result would NOT mean I was in the clear.

Now I've heard from other knowledgable folks who tell me just the opposite - that PET scan false negatives are at around the 5% range for nodules over 1cm (my largest nodules was 12mm or just over 1cm at last scan).

Who the hell knows?

Anyway, the results were negative. The Nurse, whom I trust called and told me it was 'good news' which only served to confuse me more because of what Dr. G had told me.

Since March I've been in a real funk.. feeling bad, having anxiety attacks, depression etc. I've been doing nothing but sit on my dead ass and worry since March. I feel like crap a lot of the time but I don't know if that's just from depression or what.

In 2 days I get my 3rd scan since the original sighting of the nodules. If there are more of them or the 3 have grown, I believe that will pretty much clinch the deal.. even though I've already been told by both doctors that I can pretty much count on them being recurrent RCC, there is still some lingering of uncertainty, apparently.

So this is the big one. Sometimes I feel like I'm going to be told how I will die... maybe not right away but eventually. Other times I realize that is really just my depression making me be over-dramatic.

I'm really tired of feeling like crap 90% of the time. Once this is past, I really need to start moving.. doing something other than sit around thinking about dying. If it is cancer and I have to go through some sort of treatment, I'll deal with it and get through it.

But if it's not or if it's back to watch-n-wait mode then I absolutely must get back to living my life.. cause the way it is now just plain sucks.

Yeah, I made a lot of mistakes when I was young.

If you really want to repeat each one, you'd better get busy.

Listen...

Don't forsake your future for the sake of a good party. Please.

Yeah, I know.. It's me talking. I'm always telling you what to do. But this time, I know what I'm talking about. I've lived the life you seem to be seeking and it was almost my undoing.

If you want any chance at having a comfortable life you must listen to me....

R.I.P. Don Adams...

"Missed it by that much!

Got it now...

Be careful what you think - thoughts become words
Be careful what you say - words become actions
Be careful what you do - actions become habits
Be careful of your habits - habits become character

Be careful what you think - thoughts become words
Be careful what you say - words become actions
Be careful what you do - Actions become habits


...wish I could remember the rest...

I could never say it any better than this. Thank you, Mr. Card.


A Thank-You Letter in This Time of War

By Orson Scott Card November 21, 2004

A Thank-You Letter in This Time of War

This Thanksgiving there are thousands of people I have never met, to whom I owe a debt that cannot be repaid.

To you, Marine, still weary from the battle house to house in Fallujah, whom we called upon to overcome your natural fear and go into combat in our cause: What went through your mind and heart in those days of fighting is between you and your fellow soldiers and the God who knows your heart as no mortal being can. All I can see is the outward deed -- the courage to act on someone else's orders, in protection of someone else's life, at risk of your own.

To all you soldiers, sailors, pilots, marines who have served under fire, at risk of life, volunteers in the American cause: You carry with you painful memories so that countless civilians back home will not have such memories; the vast majority of your fellow-citizens remain innocent of the agony of war precisely because you have been willing to immerse yourselves in it.

You create and maintain the safe haven in which I live. Thank you.

To you in the reserve and national guard, who came when you were called and set aside your lives and left behind your families for months and sometimes years of service you did not hope for ...

To you whose military service is not in combat, yet who labor to make sure that our troops are well supplied, well trained, and only put at risk when there is a goal to achieve that is worthy of the sacrifice of life ...

To you civilians who, unarmed, have braved the dangers of war in order to help rebuild Iraq and Afghanistan, and restore their ability to live in peace and plenty ...

You make our nation possible, our whole world safer. Thank you.

To you policemen and firemen here at home whose vigilance protects us from dangers natural and deliberate, from barbarians foreign and domestic, and from our own foolish mistakes: Each day at work you don't expect to risk your life, but that risk is always there; and your constant vigilance is our protection. Thank you.

To you, the Iraqi soldier, newly trained in an army that was under fire from the moment you first stepped into a recruiting line: You know that your own families are at risk because of your service; that while you fight to liberate a part of your country from terrorists and thugs, others might come to your own home and assault your own family to punish you. You and I are patriots in different countries, but today we share a cause, and if your country keeps the freedom our soldiers have tried to bring you, it will be because of your own steadfastness and courage and sacrifice.

To you, the Iraqi policeman, who has had to learn new rules: The civilization of your own people is in your hands. You are teaching your people that the day of the torturers is past, so that they will look to you for protection, instead of dreading your approach; and you do it despite knowing that the barbarians will try to punish you and your family for your service in that cause.

To all the Iraqi and Afghan citizens who understand that American soldiers are only in your country until you have soldiers and police and a government that can be trusted to do your will and keep you free and safe: Your cooperation hastens the day when our soldiers can come home, a day we long for every bit as much as you. Your votes in elections; your obedience to law; they are also acts of courage and determination, and the whole world is safer because of them.

I salute you; I thank you.

And to you, the American soldier who has been torn by bombs or bullets, who came home maimed in body or in spirit by this war: I cannot restore to you what you have lost, but I will try to show you by my personal treatment of you, by contributions I make and the votes I cast in support of meeting your needs, by the honor that I give to you, and by the free and decent society that I will try to maintain, that the country that you served was worthy of the price you paid and will continue to pay all the days of your life.

Thank you.

You, the family whose child did not come home alive; you who have buried the hopes and dreams you had for that child's life; how can I comfort you? Except to tell you that the lives of all the children who have not died, whose future was not broken off by war, belong in part to you, because of the sacrifice you made.

I may not have known your lost sons and daughters, but I know why they died, and I love them for their sacrifice, and will not forget them; nor will I forget you, and the constant ache that will be with you for the rest of your lives.

I believe that in the eyes of God you are all held in honor; I know that in my own eyes, your suffering and sacrifice are gifts to your neighbors, to your nation, to all civilized people, whether or not they understand. I hope it helps sustain you, to know that I and many others like me are grateful to you and to the loved one you have lost.

On Thanksgiving day, family and friends will gather around a table in my home and give thanks to God for all the good things in our lives. Our home, our neighborhood, our city will mostly be at peace; there will be laughter and pleasure in our house, as well as solemnity and prayer.

Yet we will not forget you, none of you who have served us in this struggle. I promise that we will remember: You have been the hands of God in bringing this much more freedom, this much more hope of peace and justice to God's children, not only in your native land, but also among strangers.

No one has greater love than this: to lay down your life for your friends.

For that love, for your love, I give thanks.

Copyright © 2004 by Orson Scott Card.

So tomorrow I get to go have more pictures taken.. CT Scan. CAP which stands for Chest, Abdomin & Pelvic.

But it's my lungs they wantto look at. It seems that in my last scans, they found two spots on my lungs that *could* be mets... That's new cancer growths to you healthy people.

Doc says not to worry. He doesn't think they're (the spots) related to my cancer. But, that's what they told me last time.. "Don't worry, it's probably nothing. We're just checking to make sure."

Now I'm missing a major organ.

Yeah, I'm a little scared...

There seems to be an awful lot of people out there that just plain don't have a clue and can't be bothered to get one.

I'm another 911 Republican.. Before that I was pretty much apolitical.. Just another sheeple. It never seemed to make all that much difference who was in office as far as my little world was concerned.

That was then...

But since my new interest in politics, I often find myself amazed at how many seemingly intelligent people are out there that don't have even a basic idea of what's going on. Most say they are Democrats but can't even name the VP candidate. They are just going along with what seems popular in their social circles.

They will tell you that President Bush is evil because Bruce Springsteen says he is. Any questioning of the merits of a Kerry presidency is met with blank stares... Or, if they are not sleep-walking liberals then they are often of the "lets-just-nuke 'em- all" mentality. Never a thought beyond that.. just nuke 'em.

Yep, our country is filled with throngs of ignorant and clueless people. Even at my most apathetic, I don't think I was THAT bad..

Oh well, hopefully, most of them won't vote.

Ok, I think I have it fixed for real this time...

Someone has hijacked my blog!

Going to Croakerjoe.blogspot.com redirects to some damn sparrc linux site.. I will get to the bottom of it.

Hi.. its me. I'm back.

I found this and thought it was worth posting...

http://www.smcgop.us/_fileCabinet/commentary/NoOneAskedUs.pdf

George Bush coalesced American support behind invading Iraq, I am told, using two arguments: Iraq had weapons of mass destruction and the capability to deliver them, and Iraq was a supporter of Al-Qaeda terrorism, and may have been involved in the attacks of 9/11. Vicious words and gratuitous finger-pointing keep falling back on these points, as people insist that "we" were misled into what started as a dynamic liberation and has become a bloody counterinsurgency. Watching politicians declaim and hearing television experts expound on why we went to war and on their opinions of those running the White House and Defense Department, I have one question.

When is someone going to ask the guys who were there?

What about the opinions of those whose lives were on the line, massed on the Iraq-Kuwait border beginning in February of last year? I don't know how President Bush got the country behind him, because at the time I was living in a hole in the dirt in northern Kuwait. Why have I not heard a word from anyone who actually carried a rifle or flew a plane into bad guy country last year, and who has since had to deal with the ugly aftermath of a violent liberation? What about the guys who had the most to lose...what do they think about all this?

I was there. I am one of those guys who fought the war and helped keep the peace. I am a Major in the Marine Reserves, and during the war I was the senior American attached to the 1 Royal Irish Battlegroup, a rifle battalion of the British Army. I was commander of five U.S. Marine air/naval gunfire liaison teams, as well as the liaison officer between U.S. Marines and British Army forces. I was activated on January 14, 2003, and 17 days later I and my Marines were standing in Kuwait with all of our gear, ready to go to war.

I majored in Political Science at Duke, and I graduated with a Masters degree in government from the Kennedy School at Harvard. I understand realpolitik, geopolitical jujitsu, economics and the reality of the Arab world. I know the tension between the White House, the UN, Langley and Foggy Bottom. One of my grandfathers was a two-star Navy admiral; my other grandfather was an ambassador. I am not a pushover, blindly following whoever is in charge, and I don't kid myself that I live in a perfect world. But the war made sense then, and the occupation makes sense now.

As dawn broke on March 22, 2003, I became part of one of the largest and fastest land movements in the history of war. I went across the border alongside my brothers in the Royal Irish, following the 5th Marine Regiment from Camp Pendleton as they swept through the Ramaylah oil fields. I was one those guys you saw on TV every night- filthy, hot, exhausted. I think the NRA and their right-to-bear-arms mantra is a joke, but by God I was carrying a loaded rifle, a loaded pistol and a knife on my body at all times. My boots rested on sandbags on the floor of my Humvee, there to protect me from the blast of a land mines or IED. I killed many Iraqi soldiers, as they tried to kill me and my Marines. I did it with a radio, directing airstrikes and artillery, in concert with my British artillery officer counterpart, in combat along the Hamar Canal in southern Iraq. I saw, up close, everything the rest of you see in the newspapers: dead bodies, parts of dead bodies, helmets with bullet holes through them, handcuffed POWs sitting in the sand, oil well fires with flames reaching 100 feet into the air and a roar you could hear from over a mile away.

I stood on the bloody sand where Marine Second Lieutenant Therrel Childers was the first American killed on the ground. I pointed a loaded weapon at another man for the first time in my life. I did what I had spent 14 years training to do, and my Marines - your Marines - performed so well it still brings tears to my eyes to think about it. I was proud of what we did then, and I am proud of it now.

Along with the violence, I saw many things that lifted my heart. I saw thousands of Iraqis in cities like Qurnah and Medinah - men, women, children, grandparents carrying babies - running into the streets at the sight of us, the first Western army to arrive. I saw them screaming, crying, waving, cheering. They ran from their homes at the sound of our Humvee tires roaring in from the south, bringing bread and tea and cigarettes and photos of their children. They chattered at us in Arabic, and we spoke to them in English, and neither understood the other. The entire time I was in Iraq, I had one impression from the civilians I met: Thank God, finally someone has arrived with bigger men and bigger guns to be, at last, on our side.

Let there be no mistake, those of you who don't believe in this war: the Ba'ath regime were the Nazis of the second half of the 20th century. I saw what the murderous, brutal regime of Saddam Hussein wrought on that country through his party and their Fedayeen henchmen. They raped, murdered, tortured, extorted and terrorized those in that country for 35 years. There are mass graves throughout Iraq only now being discovered. 1st Battalion, 5th Marines, out of Camp Pendleton, liberated a prison in Iraq populated entirely by children. The Ba'athists brutalized the weakest among them, and killed the strongest.

I saw in the eyes of the people how a generation of fear reflects in the human soul.

The Ba'ath Party, like the Nazis before them, kept power by spreading out, placing their officials in every city and every village to keep the people under their boot. Everywhere we went we found rifles, ammunition, RPG rounds, mortar shells, rocket launchers, and artillery. When we took over the southern city of Ramaylah, our battalion commander tore down the Ba'ath signs and commandeered the former regime headquarters in town (which, by the way, was 20 feet from the local school.) My commander himself took over the office of the local Ba'ath leader, and in opening the desk of that thug found a set of brass knuckles and a gun. These are the people who are now in prison, and that is where they deserve to be.

The analogy is simple. For years, you have watched the same large, violent man come home every night, and you have listened to his yelling and the crying and the screams of children and the noise of breaking glass, and you have always known that he was beating his wife and his children. Everyone on the block has known it. You ask, cajole, threaten and beg him to stop, on behalf of the rest of the neighborhood. Nothing works. After listening to it for 13 years, you finally gather up the biggest, meanest guys you can find, you go over to his house, and you kick the door down. You punch him in the face and drag him away. The house is a mess, the family poor and abused...but now there is hope. You did the right thing.

I can speak with authority on the opinions of both British and American infantry in that place and at that time. Let me make this clear: at no time did anyone say or imply to any of us that we were invading Iraq to rid the country of weapons of mass destruction, nor were we there to avenge 9/11. We knew we were there for one reason: to rid the world of a tyrant, and to give Iraq back to Iraqis.

None of us had even heard those arguments for going to war until we returned, and we still don't understand the confusion. To us, it was simple. The world needed to be rid of a man who committed mass murder of an entire people, and our country was the only one that could project that much power that far and with that kind of precision. We don't make policy decisions: we carry them out. And none of us had the slightest doubt about how right and good our actions were.

The war was the right thing to do then, and in hindsight it was still the right thing to do. We can't overthrow every murderous tyrant in the world, but when we can, we should. Take it from someone who was there, and who stood to lose everything. We must, and will, stay the course. We owe it to the Iraqis, and to the world.

Stan Coerr is a SuperCobra attack helicopter pilot and Forward Air Controller, and was recently selected for Lieutenant Colonel in the Marine Corps Reserve. He lives in San Diego.

"While outside on the turnpike
They got this new hit tune
Where thrills become as cheap as gas
And gas as cheap as thrills" ~ Blue Oyster Cult

I found this on one of the Iraqi Blogs and thought it was pretty good..

--snip--

A Gallon is a Gallon!

To keep things in perspective, even though it still hurts. For those who have forgotten their measurements and prices:

1 cup = 8 ounces
2 cups = 1 pint = 16 ounces
2 pints = 1 quart = 32 ounces
4 quarts = 1 gallon = 128 ounces

You Think A Gallon Of Gas Is Expensive?

It makes one think and puts things in perspective.
Check out these prices:

Diet Snapple 16 oz $1.29 ..... $10.32 per gallon
Lipton Ice Tea 16 oz $1.19 ..... $9.52 per gallon
Gatorade 20 oz $1.59 ..... $10.17 per gallon
Ocean Spray 16 oz $1.25 ..... $10.00 per gallon
Brake Fluid 12 oz $3.15 ..... $33.60 per gallon
Vicks Nyquil 6 oz $8.35 ..... $178.13 per gallon
Pepto Bismol 4 oz $3.85 ..... $123.20 per gallon
Whiteout 7 oz $1.39 ..... $25.42 per gallon
Scope 1.5 oz $0.99 ..... $84.48 per gallon

This is the REAL KICKER:
Evian Water 9 oz $1.49 ..... $21.19 per gallon.
$21.19 FOR WATER! And the buyers don't even know the source.

So, the next time you're at the pump, be glad your car doesn't run on water, Scope, Whiteout, PEPTO BISMOL or NYQUIL.

--snip--

Smoke 'em if ya got 'em...

Its about damn time I wrote in here again.. I seem to be falling into my old patterns.

The one thing I MUST not fall back into is smoking. I'm feeling quite a bit better and with that comes the urge to smoke.. more and more. I have not succumbed yet but dammit... I can't understand why this is happening to me.

The physical addiction part should be long gone by now. They say that is past in 2 - 3 days.. Hell, I was in the House of Pain, unconcious for much of that time. I didn't even think about cigs till I had been home for about a week.

The last two days, I have finally been able to have wheels, get outside and drive some.. went to pick up a perscription yesterday and drove my wife to work this morning. Both times, I played the old familiar, "I'll buy a pack and just smoke two of them then throw them away" game... Just to see if I really want to smoke again, you see.

Thats how it starts.. Thats how I've restarted smoking the several times I've been able to quit over the years. I'll play that game 2 or 3 times then decide I'm wasting too much money, throwing away 4.00 packs of nearly full cigs.. that is then used to justify just keeping the next pack and then, next thing you know, its old smokey Joe again.

This is insane. I can't let it happen. I have fucking cancer.. you'd think that'd be enough to make ANYONE quit the fucking things.

I have a chance here to really turn my life around. Once I recover fully from the surgery, I should be able to get myself into pretty good shape. My weight is way down.. My heart is in great shape - I used to worry about my heart a lot, before all this.. I always figured that if anything was gonna get me, it would be heart disease. But much to my suprise, all my gym work and running on the Torture Device there (its like a ski simulater treadmill thing..) seems to have paid off. Several times, while I was in the House of Pain, after taking my heart rate, the nurses asked me if I was a runner - it seems my "at rest" heart rate is in the low 50's, which I guess is pretty good. I was amazed. The thought of someone mistaking me for a runner, a healthy person was almost funny to me at first.. Surely you don't mean ME? A runner?

Wow!

So, I will do my best to continue fighting the urge to smoke. I must. When will the shit just GO AWAY?

mmm, I forgot to list one more of the things that I am truly happy about.. As of yesterday, I am down to 205 LBS. Thats 70 lbs gone since last nov.

That puts me within 10 - 15 lbs from my goal.

And no, my weight loss does NOT have anything to do with m illness. Yes my recent loss was due to the surgery but not the illness.

I guess that deserves a little whoo hoo!

"..and we call it knowledge and change and life itself..." ~ Blues Traveller

This might be my last entry for a few days. To give myself something to do, I've decided to reformat my hard disk and re-install Windoze XP.. My system needs it badly.. its full of junk. So, my computer will be down for a day or two at least.

First off, some good news.. My pathology report is a good one (I'm told).. Here it is:

A. Kidney, right, nephrectomy
- CLEAR CELL RENAL CARCINOMA, 6.5 CM, GRADE 3/3, CONFINED WITHIN RENAL
CAPSULE, STAGE 1bNXMX
- RENAL VEIN WITHOUT MALIGNANCY
- ADRENAL GLAND WITHOUT MALIGNANCY
- SURGICAL MARGINS CLEAR

Don't ask me what all the numbers mean. They must be ok since Doc Khaw has said I am "cured". Thats not to say it can't come back or that it hasn't already spread in ths far undetectable ways... But, I guess it qualifies as good news.

I guess I should be happy.. and I am, I suppose but something is making me uneasy just the same. Happy: 1. No work for another month, 2. doc says I'm cured, 3. I seem to be healing up really fast. I don't really feel bad at all... considering. 4. lots of time to play all the new computer games I've gotten recently, 5. Lots of family and friends in my corner, rooting for me. 6. Lots of other stuff that should be keeping me happy.

But I am a worry wart, as those who know me well will attest.. I have the folks I've met on the RCC mailing list.. people with lots of experience with this disease, telling me that I should be kicking and screaming, demanding to be scanned from head to toe to make sure my cancer hasn't spread. They say its my life and I have a right to take every precaution. Apparently, my HMO doesn't do further scanning in cases like mine unless the Dr. thinks its neccesary (he doesn't) or in case of symptoms.

Then I have the other side.. certain family members.. that urge me to just accept. Be happy that I am "cured" and trust the Dr. to do the best thing. Heal up, quit worrying and get on with life.

I don't really know what to do. The list people may seem a little paranoid to people who have never been thru something like this.. But they have experience.. sometimes, the disease DOES come back.. people do die.

Doc says I have an 80% chance of remaining NED (no evidence of disease) for 5 years... I guess thats supposed to be encouraging but... He never said what happens after that 5 years.

Am I being paranoid? Should I just heal up and shut up? Or am I being too trusting? Should I be exhausting every resource to make sure I have the absolute best chances of surviving?

One thing I will not do is drive my family into financial ruin by persuing something that may or may not be neccesary.

Grrrrr.. Its a quandry, to be sure.

Do I have a sense of relief? Yes, I do.. but this and other concerns are chipping away at it. I suppose things will level out over time.

I must fight the childish desire for someone to make my decisions for me.. to relieve me of the worry and pressure. It is my life, after all.

I guess thats it for now.. I have lots more on my mind but need to let it all simmer a bit. Not sure how much of it, if any, belongs here..

See ya next time!

Ka-chunk!


Well, I'm off to the Doc to have my 34 staples removed.. (ouch!) and also for the truly scary part of the whole thing, the Pathology report. Much is riding on that report.. wish me luck!

I'm thinking about changing the format here so that newer posts appear at the bottom. Seems like it gets a little confusing the way it is now. So whad'ya think? Please post a "Comment" below with your opinion if you read the Blogwagon on a regular basis.

[Things get a little graphic towards the end here.. skip to the end if you are easily offended or grossed out..]

....so I check into the Hospital or "House of Pain" as I like to call it.. at around 3pm last wed. After some paperwork and basic instructions, I signed off, saying basically that I wouldn't blame them too much if things didn't go my way... Anyway, it wasn't long before I was undressed and laying in a gown on a bed in a room.. My wife was there with me. After a short wait, they came and hooked up my first IV.. This just started pumping some inert fluid into me - just to get me in the mood, I guess. After a bit, they came along and added some drugs into the mix "to help me relax".

I sure did relax.. it was almost fun, that short time in that room.. I felt pretty damn good and got a little silly.. I wasn't thinking about tumors or kidneys or anything nasty at all. Boy, hospitals sure have some pretty good dope! [break]

...Soon enough though, they were carting me off to "the room". I remember being wheeled in and seeing the big lights like you see on TV... and then I woke up and "They" were saying, "all done" and I had this huge pain in my side.. Huge but not very important.. hard to explain. My wife was there and someone said that all was well and that Dr. Khaw had, "got it all" I think my son, AKA the "Blogwagon Mystery Guest" was there also. Possibly my Mom.. The next few days, oh, call it 24 to 36 hours were mostly a haze of heavy narcotics, pain and sleep.

I remember a nurse asking me to get out of bed and sit in the chair for a while. Sure, I thought.. no problem. Whats the big deal? It took everything I had to rise out of bed, take those two steps to the chair.. and I mean everything. It was incredible. Thats when I knew that this thing was in fact far worse than I ever imagined. I had no idea that I would be that weak.. even though I was told. You don't truly understand something like that till you feel it for yourself. [break]

[ahh.. a nice shower/lunch/BIG NAP combo.. ]... as I stopped using the really heavy stuff and moved to the pills, my mind sort of came back to itself.. these days were filled with naps, hallway walking adventures and the unholy combo of jello, broth and tea.. I'm not sure I'll ever be able to eat those things again. For 4 days, thats all I ate.. until my bowels started showing some signs of working again, thats all I could have. It took a bit longer than is ideal.. By sunday, I had passed these hurtles and was on to what they called "mechanical soft" which was mostly normal foods ground to smithereeens like baby food. Actually, after 4 days of the above, everything I ate there after that point was like a fine gormet meal.. simply wonderful.

It was the potty that kept me in the House of Pain for an extra day or two. First, I had to learn to pee again. That took a day or so and even though I was, at one tim, nearly in tears over the effort, once I did it was off to the races.. Getting that hose off my peepee was a major milestone for me. It was around that time though that my bowels began to act up. I became so gassy and bloated, my belly actually grew several inches.. visibly distended. It hurt like blazes - far more so than the actual incision. There was about 36 hours there that were truly nightmarish for me. I had no idea that this would prove to be the worst part of the whole thing. I'm a pretty big, tough guy but there were times when the cramps hurt so bad, I was literally in tears. I'll never forget that pain.. never had ANYTHING hurt like that and for so long.

.. and that brings me to the "tears" part... In the worst part of this, two of my best friends chose a bad moment to visit me. It happened to be during what was possibly the worst hour of the worst day. Just bad timing on their part, not their fault to be sure. They arrived, we talked a bit as I writhed on the bed, trying to act normal.. I had to run to the bathroom to try yet again to pass something.. anything, a peep of gas.. ANYTHING from my aching bowels. As I sat there on the pot, I sort of entered some sort of emotional blow-out - self pity - crying jag..

As I sat there in a life struggle with the damn toilet, desperately trying to squeese out one tiny turd, one squeeky fart just to ease the incredible pressure I had.. I could hear them in the room, discussing the merits of Warren Haynes as the new guitarist for the Dead, trying for my sake to pretend that everything was hunky dory and I thought to myself, "I can't do this any more..." the out loud.., "I want to go home!" and that did it.. I burst into tears like I haven't had since the worst moments of childhood.. I cried and cried.. I eventually had to get up (still unproductive, by the way) and go out and my wife, who could tell something was wrong, had to ask the guys to cut the visit short. God, I love that woman. She then held me while I shook and cried for a good 30 minutes.

You see, I wanted to be out there, in the conversation.. I'm normally a big, brash, in-your-face kind of guy, dominating most conversations I enter into (or trying to.. nasty habit, that..) .. and instead, there I was, a pitiful, sweating figure purched on a toilet, cursing his pain... I just lost it...

I'll blame this in part on all the pills and other drugs I had been doing.. I had been high as a junkie in a DEA evidence locker for 5 days.. But I'll tell you, I felt the better for it.. My Doc agreed and threw out some silly statistic (Docs love those..) that said that people in my situations (or similar) that had an "emotional blowout" soon after surgery, healed faster and better...

Anyway, sorry guys. I'll make it up to you. We WILL get by...

So, now I'm home and though there is plenty of pain and healing ahead, I feel pretty damn good again, considering. Thanks for reading if you got this far... See you next time!

"Doctor, Doctor, Gimmie the news..."

Well, I'm home. I won't pull any punches here.. it sucked big-time. The whole ordeal was much worse than I ever dreamed of. It was also, as many told me it would be, "over before I knew it" and "not all that bad". How do I explain this apparent contradiction? Read on.. (I am writing this in sections since about a paragraph or two seems to be all I can handle before needing a rest...)

Dear Imaginary Reader,

I'm very sorry that my stand-in, the Mystery Guest here at the Blogwagon didn't do a very good job of updating. I forgive him, naturally though I am somewhat suprised, seeing as how much time and energy he spends updating his own blogs, I thought the assignment was right down his alley. (livejournal.com / deadjournal.com) he has made his curent one "friends only" or I'd link you to it. I enjoy his writing a lot. Its really much better than my own. Some very excellent writing there but it seems that he and his friends kept getting in trouble because they would post their goings on in their public blogs where anyone, including a certain net savvy Dad could read them. Pretty funny, actually... [break time...]

I used to catch them at all sorts of shenanigans that way before they finally caught on. I forgive the Mystery Guest though, as I said.. I'm sure he's had a head full of "stuff" as much as anyone in my family lately. He visited me often while I was in the House of Pain and provided a lot of comfort.

"Everything happens for a reason.." says the father character in the movie, "Life as a House" and while my situation does not directly correspond to his in the movie (I'm not dying), I do know what he means now. The "reason" here for me was to provide me with a new found love and appreciation of my immediate family. Great movie, by the way, if you haven't seen it. It has special meaning for me.. but its a real tear fest.

Speaking of tears and the House of Pain.. [Break]

[It has taken me over 2 hours to write the above (in 5 minute increments) so I'm gonna save/publish what I have now to make sure I don't lose it. I may need to reboot for a keyboard swap.. so, To be Continued....]

surgery went well. joe should be coming home soon. he asked me to write in this but i'm only now getting around to it. i'm sure he'll give you any griddy details when he gets the chance.

surgery went well. joe should be coming home soon. he told me to write in this but i'm only now getting around to it. he'll give the griddy details when he can.

Time for a break & maybe a laugh or two..

The following is not mine.. I found it in my net travels but thought it was pretty damn funny...

--snip--

Ok folks, I have had it. I've taken all I can stand and I can't stand no more. Every time my TV is on, all that can be seen is effeminate men prancing about, redecorating houses and talking about foreign concepts like "style" and "feng shui." Heterosexual, homosexual, bisexual, trans-sexual, metrosexual, non-sexual; blue, green, and purple-sexual-bogus definitions have taken over the urban and suburban world!

Real men of the world, stand up, scratch your butt, belch, and yell
"ENOUGH!" I hereby announce the start of a new offensive in the culture wars, the Retrosexual movement.

The RetroSexual Code :

A Retrosexual does not let neighbors screw up rooms in his house on national TV. A Retrosexual, no matter what the women insists, PAYS FOR THE DATE.

A Retrosexual opens doors for a lady. Even for the ones that fit that term only because they are female.

A Retrosexual DEALS with IT, be it a flat tire, break-in into your home, or a natural disaster, you DEAL WITH IT.

A Retrosexual not only eats red meat, he often kills it himself.

A Retrosexual doesn't worry about living to be 90. It's not how long you live, but how well. If you're 90 years old and still smoking cigars and drinking, I salute you.

A Retrosexual does not use more hair or skin products than a woman. Women have several supermarket aisles of stuff. Retrosexuals need an endcap. (possibly 2 endcaps if you include shaving goods.)

A Retrosexual does not dress in clothes from Hot Topic when he's 30 years old.

A Retrosexual should know how to properly kill stuff (or people) if need be. This falls under the "Dealing with IT" portion of The Code.

A Retrosexual watches no TV show with "Queer" in the title.

A Retrosexual should not give up excessive amounts of manliness for women. Some is inevitable, but major re-invention of yourself will only lead to you becoming a froo-froo little puss, and in the long run, she ain't worth it.

A Retrosexual is allowed to seek professional help for major mental stress such as drug/alcohol addiction, death of your entire family in a freak
treechipper accident, favorite sports team being moved to a different city,
or favorite bird dog expiring, etc. You are NOT allowed to see a shrink
because Daddy didn't pay you enough attention to you. Daddy was busy
DEALING WITH IT. When you screwed up, he DEALT with you.

A Retrosexual will have at least one outfit in his wardrobe designed to
conceal himself from prey.

A Retrosexual knows how to tie a Windsor knot when wearing a tie - and ONLY
a Windsor knot.

A Retrosexual should have at least one good wound he can brag about
getting.

A Retrosexual knows how to use a basic set of tools. If you can't hammer a
nail, or drill a straight hole, practice in secret until you can - or be
rightfully ridiculed for the wuss you be.

A Retrosexual knows that owning a gun is not a sign that your are riddled
with fear, guns are TOOLS and are often essential to DEAL WITH IT. Plus
it's just plain fun to shoot.

Crying. There are very few reason that a Retrosexaul may cry, and none of
them have to do with TV commercials, movies, or soap operas. Sports teams
are sometimes a reason to cry, but the preferred method of release is
swearing or throwing the remote control. Some reasons a Retrosexual can cry
include (but are not limited to) death of a loved one, death of a pet (fish
do NOT count as pets in this case), loss of a major body part.

A Retrosexual man's favorite movie isn't "Maid in Manhattan" (unless that
refers to some foxy French maid sitting in a huge tub of brandy or
whiskey), or "Divine Secrets of the Ya-Ya Sisterhood." Acceptable ones may
include any of the Dirty Harry or Nameless Drifter movies (Clint in his
better days), Rambo I or II, the Dirty Dozen, The Godfather trilogy,
Scarface, The Road Warrior, The Die Hard series, Caddyshack, Rocky I, II,
or III, Full Metal Jacket, any James Bond Movie, Raging Bull, Bullitt, any
Bruce Lee movie, Apocalypse Now, Goodfellas, Reservior Dogs, Fight Club,etc
.

When a Retrosexual is on a crowded bus and or a commuter train, and a
pregnant woman, hell, any woman gets on, that retrosexual stands up and
offers his seat to that woman, then looks around at the other so-called men
still in their seats with a disgusted "you punks" look on his face.

A Retrosexual knows how to say the Pledge properly, and with the correct
emphasis and pronunciation. He also knows the words to the Star Spangled
Banner.

A Retrosexual will have hobbies and habits his wife and mother do not
understand, but that are essential to his manliness, in that they offset
the acceptable manliness decline he suffers when married/engaged in a
serious healthy relationship - i.e., hunting, boxing, shot putting,
shooting, cigars, car maintenance.

A Retrosexual knows how to sharpen his own knives and kitchen utensils.

A Retrosexual man can drive in snow (hell, a blizzard) without sliding all
over or driving under 20 mph, without anxiety, and without high-centering
his ride on a plow berm.

A Retrosexual man can chop down a tree and make it land where he wants.
Wherever it lands is where he damn well wanted it to land.

A Retrosexual will give up his seat on a bus to not only any women but any
elderly person or person in military dress (except officers above 2nd Lt)
NOTE: The person in military dress may turn down the offer but the
Retrosexual man will ALWAYS make the offer to them and thank them for
serving their country.

A Retrosexual man doesn't need a contract -- a handshake is good enough. He will always stand by his word even if circumstances change or the other person deceived him.

A Retrosexual man doesn't immediately look to sue someone when he does something stupid and hurts himself. We understand that sometimes in the process of doing things we get hurt and we just DEAL WITH IT!!!!

--snip--

Sorry I haven't updated as often as I'd planned.. I have plenty to say but not the words to say them.

Besides, I've been busy playing City of Heroes.. .. Its a pretty good game, if you like MMORPG's.. and I do. Maybe not the "next big thing" that everyone is waiting for but its enough to take my mind off things. Having lots of fun being JJ Flash, the fireball throwing superhero.. saving little old ladies from muggers and such.

Yeah, I'm a grown man and I love computer games..

Well, its 2 days till my surgery. I'm doing ok but I have to admit, I'm scared shitless. But thats the more concrete, easier to deal with fear of the operation itself.. The other, more vague fear is much scarier but I'm mostly able to block that out, at least till we see what the results of the operation are.

I haven't smoked since last friday night. It ain't easy but I'm doing it.

I'll try to post more later.

There are times that you can beckon
There are times when you must call
You can shake a ton of reckoning
But you can't shake it all
There are times when I can help you out
And times that you must fall
There are times when you must live in doubt
And I can't help at all


Three blue stars / Rise on the hill
Say no more, now / Just be still
All these trials / Soon be past
Look for something / Built to last


Wind held by the collar
Got a cloud held by the breeze
You can walk on coals of fire
But sometimes you must freeze
There are times when you offend me
And I do the same to you
If we can't or won't forget it,
then I guess we could be through


One blue star / Sets on the hill
Call it back / You never will
One more star / Sinks in the past
Show me something / Built to last.


Built to last till time itself
Falls tumbling from the wall
Built to last till sunshine fails
And darkness moves on all
Built to last while years roll past
Like cloudscapes in the sky
Show me something built to last
Or something built to try


There are times when you get hit upon
Try hard but you cannot give
Other times you'd gladly part
With what you need to live
Don't waste the breath to save your face
When you have done your best
And even more is asked of you
Let fate decide the rest.


All the stars / Are gone but one
Morning breaks / Here comes the sun
Cross the sky now / Sinking fast
Show me something / Built to last


~ Hunter

Parts is Parts

Had my pre-op thing yesterday with Doc Kahw (not sure if I spelled his name right).

Not much new to report - it will be a Radical Nephrectomy which is the removal of my entire right kidney and adrenal gland and possibly some surrounding tissue or lymph nods, depending on what they see once they open me up. April 14, Kaiser hospital (At Zion & Mission Gorge) at around 6pm. The surgery will last 3 - 4 hours and another hour or so in recovery.

One fun and exciting new development is that, apparently because I have an extra large rib cage, they will also be removing one, possibly two of my ribs to gain the access they need.

Honestly, this bothers me as much as anything. The thought of them removing large parts of me and tossing them into the dipsy-dumpster makes my flesh crawl.

***

Yesterday, after we left the hospital, Dianna and I went to Old Town and pigged out on Mexican food. Fuck my diet.. I imagine I'll be dropping more weight from the surgery anyway. Heh, I've done similar several times over the last week or two and have gone from an all-time low of 213 lbs back up to 217 lbs.

Before all this cancer crap, I'd have been horrified.. I've done so well with my weight loss, but now it doesn't really seem worth fretting about. What the hell, I still weigh 58 lbs less than I did last Nov. anyway.

So anyway, with lunch, I also downed 2 large margaritas.. I got a little buzzed but I actually got myself into a pretty good mood and Dianna and I managed to have a few laughs. That was good.

Then we came home and she found a wrapper of hair dye in the bathroom. We knew right away that Jason's first act of independance after reaching the grand old age of 18 was to dye his hair black again. I'm afraid I sort of lost my good mood then.

Listen, I know its just hair. It doesn't really hurt anything, I suppose.. though I worry about his finding and keeping employment - it looks pretty outlandish to me. But I am a veteran of many arguments over my long hair with my father.. You'd think I'd be more tolerant.

But when I saw him, a natural blonde, with his black/purple hair, I lost it. I yelled at him, "Nice fucking job, you look like a goddamm idiot!". He got back in the car and drove away without a word. I feel really bad about the whole thing. I am still unhappy with his doing it but I definately over reacted (as I often do). Anyway, I finally got him to call me back on his cell and we sort of made up... but I still feel crappy about the whole episode.

The most important thing in the world to me right now is that my family knows that I love them without reservation... no matter what.