Hammers and Nails

"When the only tool you have is a hammer,
everything looks like a nail..."

~ Phish


Greetings, Imaginary Readers, where ever you might be...

I haven't written in here in a long, long time but I want to start again so off we go!

See, I've been in a weird place lately. It's not a very good place so this is hopefully the start of my journey out of it.

This won't be a post about my medical troubles.. most anyone bothering to read my blather knows most of that stuff anyway. Suffice it to say that I am still growing cancer in my brain, the docs keep zapping it away and I'm feeling not-so-bad for the most part and am ready to go back to work soon if I can wrangle it.

Here's the deal.. At some point, mostly over the last six months or so, I became convinced that I was going to be dead by now. The problem with this sort of thinking is that things change perspective in a very negative way. I originally thought it was just a way to stop myself from worrying all the time but it doesn't work that way.

Things stopped mattering to me. So, for example, I started smoking again.. Why not? It's not like getting cancer is a big fear of mine these days.. C.O.P.D. or name-your-smoking-related-malady? Who cared? I was going to be dead soon anyway, remember?

Why stay in shape? It's just a lot of hard work for a dead guy.. I'm supposed to be dead by now, I told myself, so I just stopped caring about much of anything. It seemed to me to be the easiest way to stop worrying and feeling sorry for my self. WRONG-O.

So what if I'm addicted to my pain meds.. I'll be dead before it matters. Right? Right? Bueller?

(I'm not really sure about the addiction thing but it's a possibility.. been talking with Mr. Percocet for quite some time now though I never take more than prescribed..)

I stopped reading for pleasure, I stopped writing, listening to music, playing with my computer. Hell, I even stopped masturbating or having any sex at all (Is that T.M.I. (too much information)? Probably. Who cares?

The one thing I never stopped caring about was and is my wife and family, whom I love beyond description. And things are mostly very good there. I didn't matter, only they did.

But any problems I did see there, mostly regarding their future well-being, seemed so insurmountable and unsolvable that I just tried not to think too much about that either.

Fat chance.

I used to spend an awful amount of time reading an awful lot about brain cancer statistics and median survival times and prognostic indicators and for someone in my position, what I read is not encouraging to say the least.

(Incidentally, for a more realistic and comforting view of such things, if you find yourself hung up on the odds of your own or a loved one's life expectancy, as I have been, I highly recommend the following article. It's called, "The Median isn't the Message" and here's a link:

http://cancerguide.org/median_not_msg.html )
(I should read this on a regular basis..)

Someone I should have listened closer to once told me something about cancer and statistics.. Here it is: They said that Milk cartons have expiration dates, people don't. Sage advice, that.

So I'd like to say that I'm done with all that. I'm probably not, not entirely but I'm going to try my best. Instead of sitting around waiting to die, I'd rather just assume that I will live - be it six months or sixty years. It's better that way for myself and for everyone around me. It has to be.

See, my feeling this way effects more than just myself, it has an effect on everyone around me and those that love me. It probably hurts them more than it does me. I'm still not afraid of dying, in and of itself (not a big fan of pain though lol).

I guess that's it for now. I had more to say but everyone is home now and I've lost my muse, such as it is.

I'll try to write more soon, Mr. Blog, Sir.

Go Chargers!

Well, here I am once more in Beautiful Hollywood, CA. for the 2nd time this year to have my head zapped by the big Novalis machine.

I'm in a cybercafe right on Hollywood Blvd. - Fun, if you like people watching like I do.

This time, I'm here for just one little .5mm met recently found in my left temporal lobe. That should be a snap but the rad. onc. in charge did warn me that sometimes they find more on these scans which apparently are more capable at picking stuff up than the leser machines used back at San Diego Kaiser.

I guess they bring out the big guns for folks like me. He also said that occasionally, they'll find nothing at all - I guess sometimes this happens with people on Sutent though I believe it's rare.

Still it's something to be hoped for.

Assuming they do find a little something, which seems likely, I am scheduled for a date with the Novalis machine tomorrow and should be home safe in San Diego by Thursday.

I hope everyone else is doing well and will post again once I know the story here.

Peace and good health to all RCC warriors!

- Joe

Cancer sucks!

I have to admit, things are getting a little scary for me again.

For the first time, today one of my docs referred to the nodule in my back as a met, unhesitatingly, as if there were never any question. Up till now, my other docs were all saying that the scans were inconclusive but this doc didn't seem to have much doubt.

I'll be getting a bone scan in the next few week which will hopefully nail it down one way or another.

Meanwhile, I am working on scheduling Novalis radiation treatment for the new nodule in my brain. That will mean another trip up to Hollywood (BLEH) - hopefuly I won't have to stay there an enture week this time.

I've been reading too many statistics and descriptions of the types of problem that can arise from having mets in the places I have them - most recently that would be in the temporal lobe - and I'm scaring the shit out of myself. I really need to cut that out.

This Feb. will be the 1 year anniversary of that first brain met and the dark, negative side of me is keeps wondering if I'll even make it to that point or how much longer.

Yeah, I'm in one of those moods again... :/

(My head hurts)

Understand

You've been talkin' back and forth in rhymes, you don't listen
Doesn't matter what I say

On your way...Gone
One too many days

You've been walkin' back and forth it's time that your missin'
Gets more pathetic every day

On your way...Gone
One too many days

Yeah I'll rue the day, when the day would come to you, wonder who's that man?
You look at you and notice that you and me have the same hands
These hands, your hands, they are my hands, they are our hands...Understand?
Well I hope we never go there...Understand?

You've been lying in and out of the sunlight
Time and seasons sleeping on the floor

On your way...Gone
One too many days

You've been driving up and down the countryside
Rhyme and reason just flew out the door

On your way...Gone
One too many days

Yeah I'll rue the day, when the day would come to you, wonder who's that man?
You look at you and notice that you and me have the same hands
These hands, your hands, they are my hands, they are our hands...Understand?
Well I hope we never go there...Understand?

You've been talkin' back and forth in rhymes, you don't listen
Doesn't matter what I say

On your way...Gone
One too many days

Yeah I'll rue the day, when the day would come to you, wonder who's that man?
You look at you and notice that you and me have the same hands
These hands, your hands, they are my hands, they are our hands...Understand?
Well I hope we never go there...Understand?
I hope we never go there...Understand
I hope we never go there...Understand
I hope we never go there...Understand

~ Al Schnier - moe.

New mets :(

[From my recent "List" post]

--snip--

Hi folks..

I just got some news. My neurologist just called me with my recent MRI results and the results are good and not-so-good.

The good news is that my previous radiation treatments have resulted in significant shrinkage of my remaining brain mets (The ones that popped up after my first SRS (Novalis - similar to Gamma Knife) ) So it appears that the Whole Brain Radiation that followed may have done me some good after all).

The bad news is that a new brain met was found. It's fairly small, just under 1 cm. But brain mets are never good news so I'm just a little freaked out.

I'm not sure of the exact location but this probably explains the increasingly severe headaches I've been getting. It is possible that I can get this new met zapped with more gamma knife so I'm crossing my fingers on that one.

I have an appt. with Dr. Gailani tomorrow to discuss the new brain met and the possible met that was recently seen on my spine. I have a bad feeling that this may spell the end of my treatment with Sutent (which had been working well for me) if I have to go back on steroids.. I believe I read that I can't do both at the same time.

God, I really hate those steroids...

--snip--

Witch Fire

"Look at the sky turn a hell fire red
Somebody's house is burnin' down down, down down
Down, down, down."

~ Hendrix

So once again, as in Oct. of 2003 (IIRC) it seems like the entire world is burning down here in San Diego. Right now, after burning for 4 days now, the fires are in a horseshoe pattern with us in the middle. I think we'll be ok though as the Santa Ana winds are easing up some. We just hope the wind doesn't shift and start blowing to the south/west.

The fire came within a stone's throw of our house in 2003 and our neighborhood was evac'd. It hasn't come that close this time around even though this fire is even larger than the 2003 Cedar fire. It's pretty scary regardless.

We really, really need a good rainy season around here... everything is dry as can be.

Nothing much new on the medical front. I'm hoping to have the report from last week's scan in hand by this Friday. I believe they would have called by now if anything too bad was seen so I am hopeful that I'll get a good report and be able to continue on with the Sutent.

What color is God?

"Why can't you tell me, can't you tell me?
What colour is god?"

~ Fish

Watching the News always makes me wonder about this world we live in.

Why do so many people object to the word "God"? Especially when associated with the United States?

I should tell you that I am not a religious person, though I'm not quite an atheist either. But I just read a story about a man that requested that a U.S. flag that was to be used as a memorial for the man's grandfather, a WWII vet, to include a certificate that had the words, "God, Country and Family".

But when the man received the certificate, it included only the words, "Country and Family". No deities allowed, apparently.

What gives? It doesn't specify which god. Don't most if not all deities translate as "god" when spoken or written in english? And if you're an atheist or agnostic then why would it effect you one way or another? You don't believe in him anyway, right?

People are really weird.

Got Mule?

"It's been a long time since I rock and rolled,
It's been a long time since I did the Stroll..."
~ Led Zeppelin

If anyone still bothers to look in here, I apologize for my long absence.

I've just not had much to say. Or, I have plenty to say but have lacked the gumption (I love that word) to get in here and write anything.

I've been taking a cancer drug called Stutent which had left me pretty listless. I take the drug in cycles, 4 weeks on then 2 weeks off, I guess indefinitely as long as it keeps working. I won't know till November whether it's doing me any good or not.

Luckily, during the 2 week rest period, the side effects abate for the most part so after the first few off days, I'm feeling a lot better though I still have the various other side effects from the radiation to deal with - I'm told it could be as long as 6 months to get over that (December)

Still, it feels good to have at least some of my energy back. I even mowed my lawn this morning with the old fashioned push mower (OK, I have a tiny yard and I'm putting the raking and sweeping off till tomorrow but cut me some slack, hmmm? :) ).

My favorite band, Gov't Mule, is coming to town this Nov. and I'm really looking forward to it. I hope I'll be feeling well enough to go and enjoy it properly. I'll be going with Glenn, my usual concert buddy but also hope to take along my 21 year old son to show him what a real rock 'n' roll show is like. Can't wait!

Just a quicky...

Just a quick and dirty cut -n- paste job from my Kidney-Onc List post to keep the ol' blog up to date...

--snip--

Hi folks,

Well, I just read through the report from my most recent MRI of my noggin.

There's some bad news but some good news as well..

Bad news first... The right Cerebral frontal lesion shows a "very slight" increase in size.

That's the bad news. Not too bad though, eh? Especially when compared to what my imagination had cooked up for me.

Those magic words, "NED" would have been more fun but this doesn't sound too bad, considering. I'll take it.

The better news:

There was a "slight decrease in size of the hemorrhagic left parietal lesion and no regrowth or recurrence of the left posterior parietal postoperative lesion.

(I'm not sure what this next part means or if it's good or bad...) multifocal small white matter long-TR hyperintense foci unchanged without contrast enhancement and without vasogenic edema.

(If anyone has a clue about that last paragraph, comments are more than welcome.)

No evidence for herniation or for midline structural shift

(not sure about the above line either..)

And saving the best for last: NO EVIDENCE OF INTERVAL NEW METASTASES (Yay me!)

So it seems like a fairly positive report, certainly better than I had been anticipating.

I still haven't consulted with any of my onc. docs regarding my recent CT or this MRI. If no one contacts me soon, I'll get on the horn and get after them. Or better yet, I'll sick my wife on them.. that'll get them moving if anything will... :)

Hang tough, fellow RCC warriors!

--snip--

Lazy damn doctors...

In about 1 hour, I'm driving down to Kaiser to get the written part of my MRI report. Scanxiety is at an all time high.

Apparently, Kaiser are just too busy to be bothered by having call and give their opinions so I have to go get the report myself and hope I can make some sense of it. As it stands right now, I don't even have any appointments set up with ant of my onc, docs.

Hey, maybe that means I'm all cured! ....or not.

I really dislike Kaiser's way of dealing with this sort of thing. (or, more properly, NOT dealing with it...)

Don't they realize that I might be just a little bit anxious to hear what they have to say about these latest CT and MRI scans? Sheesh!!

Oh well, I'll pass along the info as soon as I am able...

The Mask

"Pay me, I'll be your surgeon
I'd like to pick your brain..."

~ Blue Oyster Cult

So here are some pics of the mask that was used for my Whole Brain Radiation treatments. The mask used for the earlier targeted SRS (Novalis) treatments was very similar only much tighter and more uncomfortable.

Either one beat the hell out of the older method which involved a "halo-like" device which they apparently bolted directly to your head. This method is still used in some places, I'm told though I can't imagine why.

The marks you see on the outside of the mask are used to make sure your noggin is in precisely the same position between treatments. As I've mentioned before, the treatments themselves were no big deal, especially the WBR.

Basically, they lay you on the table, put your head into the mask and then fasten the mask to the table. Then they use the marks to position you properly.

Then it's zap, zap, zap... and that's about all there is to it.

MRI day

"Well I bumped inside the magic man
And he layed some tricks for me
He said, "You do need help my friend"
I whispered, "obviously"

He laid a spread of Jacks and Queens
And he bade me take my pick
But every face had your face
I cried out, "I am sick..." "

~ D. Roeser - P. Smith (Blue Oyster Cult)

Today is a big day for me. In about 45 minutes, I'm off to Kaiser for what may prove to be a crucial MRI scan of my brain. Hopefully, I'll soon know if both the targeted SRS treatments I received back in April and the more recent WBRT has done me any good or not.

The best news would be that all existing mets have been eradicated. This is not terribly likely but is not ungeard of either. If they've shrunk or even just become stable, well, even that would be cause for celebration.

If the brain lesions have grown or, worse, new ones have appeared... well, lets just say, that would suck in a big way. I don' think I need to say what that would do to my chances of overall survival.

I feel pretty good and am trying to stay positive but I have to admit, I didn't really know what "Scanxiety" really meant till now.

Unfortuately, this is Kaiser we're dealing with so I probably won't know any result till a week from today at the earliest. Be sure that I'll update here and on the List as soon as I know anything.

In the mean time, any positive vibes you may have to spare are more than welcome. And those of you with religious beliefs, well, if you don't mind sending out prayers for this old unbeliever, well, I'll gratefully accept those as well. I may need all the help I can get.

I don't need no doctor...

"I don`t need no doctor
My prescription tells me that
I don`t need no doctor
I don`t need no doctor

All I need is my baby
You don`t know I`m in misery

I don`t need no doctor
I don`t need no doctor

Well, the doctor said I need rest
He put me on the critical list
Keeping me safe from harm
All I need is her sweet charm

He gave me a medicated lotion
It wouldn`t do, woah yeah
My emotion, oh yeah

I don`t need no doctor
I don`t need no doctor
I don`t need no doctor"

~ Humble Pie

So I got the results back from last week's CAB (chest, abdomen, pelvis) CT scan . Looks like that shit is still growing.. The largest nodule is now up over 2cm. I'll have to check the previous scans but I believe this is the most growth I've had between my 3 months scan schedule.

Not the what I was hoping to hear but it could be worse, I suppose. AFAIK, my regular onc docs are either unable or unwilling to treat the lung lesions until my brain mets have at least stabilized (I'll know about that in about 2 weeks). Till then I guess it's RCC free-for-all party time in Joe's lungs... (Wheeee!)

Here's a cut-n-paste job from what I scanned off the report. As usual, much of it is greek to me but I'll get busy with google when I'm done here. I haven't talked to any docs yet about these results.

--snip--

DATE OF EXAM: June 28, 2007 NAME OF EXAM: CT chest, abdomen and pelvis TRANSCRIPTIONIST'S INITIALS: efs COMMENT:

CT examination of the chest, abdomen and pelvis was performed following intravenous and oral contrast. Transaxial CT images were obtained through the chest from the thoracic inlet to the lung bases.

Comparison is made with previous CT dated March 12, 2007. 2.5-mm thin sections through the chest were obtained. There is a 4.8-mm in size non-calcified pulmonary nodule within the posterior right upper lung field, near the major fissure and likely within the right upper lobe, slightly better seen on the current examination.

There is a stable 4.8-mm in diameter nodule within the right middle lobe and slightly enlarged non-calcified pulmonary nodule within the right lower lobe which currently measures 12-rnjn (increased from 10-mm) in its largest dimension. On the left, there is a lobular enlarging mass within the left lower lobe which currently measures 2.4 x 2.1-cm in its largest dimension. Adjacent to this is increasing linear density consistent with scarring or atelectasis. Increased linear scarring and atelectasis is also seen more anteriorly within the lingula.

There is no evidence of pleural effusion. No new parenchyma! nodules are seen within either lung. There is no significant mediastinal or hilar adenopathy. The heart remains normal in size. There is no pericardial thickening or effusion. The great vessels appear normal.

Transaxial images from the liver dome through the symphysis pubis demonstrate normal-size liver and spleen without focal mass. The patient is status post right nephrectomy. The left kidney enhances normally without evidence of solid mass or cyst. The pancreas and left adrenal gland appear normal. The patient is status post right adrenalectomy. No intra-abdominal or pelvic adenopathy or ascites is seen. Bone windows demonstrate no definite osseous metastases. The right eleventh rib has been partially resected.

IMPRESSION: -1) In comparison with the prior CT's of March 12, 2007, multiple bilateral pulmonary nodules, the largest within the lower lobes, have increased in size. Status post right nephrectomy and right adrenalectomy. Result SCHED FOR JUNE '07

--snip--

Panic attack!

"Climb to safety
After all that I've been through, you're the only one that matters
Climb to safety
You never left me in the dark here on my own
Climb to safety
Feel the water rising. Let me be your ladder
Climb to safety
I promise you'll be dry and never be alone

You call me on the phone, you say that it is crucial
You stick your fingers in your ears 'til they explode
I guess the business will be goin' on as usual
We must grab each others collar, we must rise out of the water
'Cause you know as well as I do that it's no fun to die alone

Climb to safety
After all that I've been through, you're the only one that matters
Climb to safety
You never left me in the dark here on my own
Climb to safety
Feel the water rising. Let me be your ladder
Climb to safety
I promise you'll be dry and never be alone

Climb to safety, safety
Climb to safety, safety
Climb to safety, safety
Climb to safety, safety"

~ Widespread Panic

No, not that kind of panic attack! This was the good kind...

I was able to go out last Sunday night to see Widespread Panic with my good friend.

I can't begin to tell you how good it was to get out of the house, hear some great live music and feel like my old self, at least a little.

It went very well. I had been worried that I'd get too tired or get one of my headaches but I felt fine though I did have take my cane along and sit down quite a bit to rest.

But it was a smallish venue and the sound was excellent no matter where you sat.. WP is not really a visual type of band.. it's more about the jams so sitting in the back was just fine.

I was dead tired by the time I got home but it was well worth it.. I've been tired before.. :)

I have to admit, I am not used to going to a show completely sober like that (I can't really drink alcohol at all now days) but it was no big deal. I spent so much of my earlier days partying like there was no tomorrow, I guess a little sobriety is probably a good thing.

Hearing live music that I love and thinking about something other than cancer for a few hours is the best sort of party anyway....

Can't get high...

"Violent romantic
On a seven day binge
Losin' a gamble
But I get my revenge
Start thinking about thunder
And I get mad again
Soaking up electricity
Like bourbon and gin

Now that you're gone
I'm sober every night
I can't get high - no -
I can't get right"

~ Widespread Panic

Coffee shop day...

I think I've finally turned the corner as far as this week's steroid dose reduction.. Now down to just 1mg. am and 1 mg. pm. This was a difficult one. I began getting terrible headaches Sunday morning and had to resort to visiting good old Mr. Oxycodone. But it was a little better each day and today I'm feeling almost normal and havn't had to take any dope. (The oxy makes me feel great, even if it doesn't alwats kill the headache completely but I really don't need to develop a habit with the stuff so I try and use it sparingly..)

So it looks like I'll be going with my buddy to see Widespread Panic on the 1st. We should be able to get handicap parking and hopefully seating as well.. (I still can't walk or even stand for long periods of time). So hopefully I'll feel well enough to enjoy the music.. though it still feels odd to me to go see a show completely sober - I don't dare drink anything these days...

But I've been stuck at home so much these last few months, I'm really looking forward to it. I just hope it's not a drag for my friend having to hobble along with the sick guy..

...and I'm out!

"Consideration for your fellow man
Would not hurt anybody, it sure fits in with my plan
Over the border, there lies the promised land
Where everything comes easy, you just hold out your hand

"Keep your suspicions, I've seen that look before
But I ain't done nothing wrong now, is that such a suprise
But I've got a sister who'd be willing to oblige
She will do anything now to help me get to the outside

So don't tell anybody what I wanna do
If they find out you know that they'll never let me through, because

It's no fun being an illegal alien, I tell ya
It's no fun being an illegal alien, and it's getting me down
It's no fun being an illegal alien, no no no no no
It's no fun being an illegal alien, yeah yeah yeah"
~ Genisis

I found me a new coffee shop with free WIFI access. Iit like this one so far - it's easy to get to from where I drop Dianna off at work and seems friendly. Iy's in Kensington off Adams Ave. near to where Dianna and I lived when Jason was born.

I do prefer it to the library because they have good coffee, a better atmosphere and are open early (Library doesn't open till 10.

Not much to say today but I promised myself to post *something* every day that I am able.

I continue to feel slightly better each passing day.. not dramatically so but noticeable. This is good news.

I keep seeing signs, bumper stickers and t-shirts that say things like "Human Beings are not Illegal", "Being Mexican is not a crime" and so on.

I couldn't agree more but have to add that what IS illegal is sneaking to the U.S. illegally. Why is that so hard for so many people to understand?

All people are welcome in this country, it's what we're supposed to be all about, right? Color, race and religion make zero difference as long as they're not criminals or whatever.

So name me one single other country that allows people to come at will to live in their country and live with no proof of who they are or need to pay taxes and so on. As far as I know, there isn't one, including Mexico itself.

Yet Americans are seen as evil racicts for not just allowing everyone to come and go as they please.

It ticks me off and there is nothing racict about it. I'd feel the same about white skinned Canadians if they were coming over in similar numbers.

/rant off

For your amusement...

"I looked in the mirror today
My eyes just didn't seem so bright
I've lost a few more hairs
I think I'm going bald

I think I'm going bald

Seems like only yesterday
We would sit and talk of dreams all night
Dreams of youth
And simple truths
Now we're so involved
So involved with life

Walk down vanity fair
Memory lane everywhere
Wall Street shuffles there
Dressed in flowing hair

Once we loved the flowers
Now we ask the price of the land
Once we would take water
But now it must be wine
Now we've been
And now we've seen
What price peace of mind

Take a piece of my mind

My life is slipping away
I'm aging every day
But even when I'm grey
I'll still be grey my way"
~ Peart

As promised....



That's one handsome, blue-eyed devil, hmmmm?

Still alive & Well... (every now and then I know it's kinda hard to tell...)

Well, I haven't posted here in a while and I imagine that the legions of adoring Wild Ride readers are clammoring mightily by now... (cough) [sound of crickets]

Today is my last day of Whole Brain Radiation Therapy (WBRT). I hope it has done me some good but have to admit that I don't have a lot of confidence in it. Most literature I've been able to dig up seems to suggest that it (WBRT) is just no good at wiping out "radioresistant" tumors such as Renal Cell Carcinoma.

Still, if it buys me some time and quality of life then I guess it'll have been worth it.

I am starting to get a little uncomfortable about the following weeks as I understand that the cumulative effects build over weeks and months and that it's likely to get worse before it gets better. But we'll see. I still feel fairly decent for now though I'm weaker than a geriatric lamb these last few days.

Lets see.. lots of other stuff going on around here.

My brother is flying in from Baltimore today with our 17 y/o nephew whom has been staying with them in DC while his father was in jail for assaulting the boy's mother - my sister - who was recently admitted to a full-time nursing care facility, probably permanently due to severe diabetes, spinal meningitis and a whole host of other dire health issues both mental and physical, some self-inflicted and some just plain shitty luck. She is 9 years my senior.

My bother, 10 years my senior, has just recovered from a quadruple bypass accompanied by a few scary days from complications - revisits to the hospital due to infection. But he seems to have come through it all in fairly good shape.. Oh and his younger daughter is getting married in a few months so I sure hope everyone can remain healthy long enough to attend, including myself. The wedding will be on the east coast so I'm not sure if I'll be up to it by then or not but I am hoping, even though I barely know her, sadly.

The father of my sister's son, my nephew, was arrested for assault I believe on the same night that I went to the hospital for that initial brain tumor/hemorrhage. No one mentioned it to me till a week or so after. I guess they figured I had enough on my mind as it was.

Turns out that this normally quiet, timid man got drunk, freaked out and tried to stab my invalid sister. The charges were eventually reduced from attempted murder to assault. He's still in the clink as I type this and there's a whole lot more to that story but no need to go into it here...

My father is losing his eyesight to macular degeneration and suffering severe depression for which he flat refuses any sort of treatment for and my mother seems to be slipping into early stage alzheimer's and hearing loss.

Sometimes it feels like our entire family is going to hell in a bucket.

But I know many out there have it as bad or worse so I keep my head up for the most part. But some days.....

I don't usually talk about my family much here and I'm not sure why I did today.. it was just on my mind I guess.

See you next time..

Rock and Roll ain't noise pollution...

"If my words did glow with the gold of sunshine
And my tunes were played on the harp unstrung
Would you hear my voice come through the music
Would you hold it near as it were your own?

It's a hand-me-down, the thoughts are broken
Perhaps they're better left unsung
I don't know, don't really care
Let there be songs to fill the air"
~ Hunter

I love rock lyrics, don't you?

Sure, a lot of it is crap and doggerel but there's plenty of good stuff too and maybe it's because I've spent my life listening to rock music, I can (and do) find some song quote to go with nearly any situation.

It's sort of like a reflex with me.. I hear people say things, read a line from a page in a book or have a certain thought and songs are launched in the radio that I carry in my head.

It might be an Alice Cooper song from 1972 or Phish from 1998 or even some annoying commercial jingle from 2007 - I guess what I'm trying t say is, I am and always have been deeply moved and motivated by music of all kinds.. though I will always be a rocker first and foremost.

Music heals me, soothes me and calms me. I can even be calmed, under the right circumstances, by something like a really noisy, hammering speed metal song - "Master of Puppets" by Metallica, maybe though I usualy gravitate to mellower stuff these days.

Sometimes I think everything will be ok as long as I never lose my music....

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!