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Craig? We're missing you

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Hey buddy we are all a bit on the worried hoping it isn't your pain keeping you from us.  I personally am trying to imagine you are simply taking a week off of work and not around a computer. At least that's what I'm hoping for rather then you being in pain.  Or if the pain was too much the doc's got you in the hospital and are fixing you up.  Whatever it is, I hope we hear from you soon my friend.

Hugs,

Winter Marie

Chelsea71
Posts: 1170
Joined: Sep 2012

Thinking about you, Craig.....hope everything is okay.  Miss you.  Need your wisdom.

jen2012
Posts: 1208
Joined: Aug 2012

Me too...hope you are ok!

LivinginNH's picture
LivinginNH
Posts: 1308
Joined: Apr 2010

 

Hi everyone,

I just spoke with Craig, and he stated that he'll post to everyone tomorrow.  :)

Hugs,

Cynthia

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

thinking about you, Craig.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

craig

 

hope you're okay pal.

 

thinking of you

 

Joe

 

danker
Posts: 748
Joined: Apr 2012

We look forward to hearing how you are doing.  Good Luck!!!

Joy1216's picture
Joy1216
Posts: 281
Joined: Mar 2006

I just looked and he was online today.  He just may not want to communicate right now but he is checking on everyone.

Joy

janderson1964's picture
janderson1964
Posts: 1647
Joined: Oct 2011

I am anxiously waiting to hear from you Craig. I miss you brother.

Sundanceh's picture
Sundanceh
Posts: 4302
Joined: Jun 2009

Well, I unplugged there for a few days...

I figured I could inconspiciously slip out under the wire:)

I was trying to let everybody off the hook with the last update I had so folks wouldn't be worrying too much...

The docs had been passing me back and forth like a hot potato and there has been alot of change and tests that were ordered etc. over the past week or so. 

I did another MRI...this time for the liver....they iced me down and pulled me out where they could and we got through that one, but it was still tenuous and not easy.  So, I finally gave them the 'detailed' view of the liver they wanted to see.  The report indicates metastasis back to the liver....CEA count has risen from 9.2 to 51.5 in about 5-weeks.

I'd say something was definitely on in the liver.

My radiation onc (along with seeing the liver MRI) also wanted to see the old game plan we did at the other big Dallas hospital (Baylor)....he wants to compare those old notes and X's and O's to see if there is any wiggle room to do a surgical interventional procedure of some type.....like SBRT again.

The problem is the new activity is very close in proximity to the old battlefields of battles fought long ago...

And you can't overlap the treatments and radiate previously radiated areas as that would cause troubles in their own right.  So, he is being careful in his approach, but he is aggressive in the fact that he wants to do something other for me than just chemo.

He told me that I had already "proved" to him what type of fighter I was and that while he might hurt me in the process, he'd be willing to step outside of the conventional chemo type thinking to see if there is more out there that he could to help me.

I really felt betrayed that the hospital that I had touted and given a good deal of my life for....had sort of forsaken me, because they were "scared" of my case now.

In actuality, they just don't want to be the ones responsible for "something" going wrong with me based on their recommendations. 

What am I paying for here?

All of a sudden, I'm just Chemo Fodder and that's it.....just write me off?  Just like that?

Of course, I realize I'm nothing more than a pawn for the hospital, even when we were making medical history doing the da Vinci for the lungs....I knew it then...and I know it now...but I thought our trust level was at an all-time high.....and then it felt like it went to an all-time low.....and so I felt a little bit abandoned....a little bit betrayed by the folks I had given my life too....and tried so earnestly to help. 

Now, there's wrinkling of biopsies wanting to be done as I've seen the tests "ordered" and put on My Chart.

Looks I'm set now for liver biop and lung/pleura biop later this week....

I'm not a big fan of biops...I've personally had false/negatives in the past and my old liver biop was botched along the way that resulted in a marble sized structure that grew from the inside out....it was a hard calcification that developed from them going into the liver about 8x just trying to hack out some liver tissue for the biopsy.

It took 4-years, but that area has now recessed and sits flush between my ribs again.

And the lung biop is not without risk....they have to go through the pleura in two areas.....the risk of needle puncture and a collapses lung...and of course, you worry about seeding any potential mets with a procedure like this.

I've considered waiting another couple of months (for lung/not liver) to see if the area grew enough to unmask itself....lots of scar tissue in there, which got Dr. D. not wanting to get surgically involved at this time even.

And yet, there is pain there that mimics lung/tumor pain from the last fight....and it began hurting in pretty short order before we got the hint of a possible recurrence there.

All indications are something is there....I know Dr. D. thinks something is there but he is being non-commital...more importantly, I "feel" something is wrong in there that differs from the normal what is wrong in there feeling I've grown accustomed to living with.

So, I'm weighing the risk of the biops to know if there is metastatic cancer back in the pleura of the lung....we really do need to know if possible.

I've been approaching this cautiously and have been gathering facts in order to make some kind of competent decision based on the facts I've been able to ascertain.

They were ready to schedule surgery and pull out my spleen and put me immediately on Oxy....but I told them I'm not jumping through their hoops anymore until we can get a more definitive answer...

Before I re-introduce life changing chemicals back into my system...before I start having organs systemicatically removed.....I want to know if the enemy is real....or is he a shadow?

Apparently, my rad onc is in agreement with me....as he's the one who's ordered these latest biops....the rest of the gang is in chemo land awaiting my decisions.  It's almost like they are so anxious to get me back into chemo....

I can tell you that I've got these doctors thinking and talking....in some strange way, I've become my own oncologist handling my own case....it's almost like they are deferring to me to make the decisions for them....it's very strange. 

I guess my reputation precedes me, because everyone (before they ever got talking) wanted me to tell them what my assessment of the case was....and how I was seeing it.

Flattering really.....

But....only one guy out of the four, who still believes in me?  Only one guy with the guts to look beyond what everyone else doesn't want to see?

Wow....that was Enlightenment.

So, I'm still on the medical treadmill trying to determine what we are fighting....hopefully, these last 2 biops will be some kind of predicator of how the fight could go.  And I'll be waiting to hear from the liver onc about any plans he might have (surgical/radiation) based on the info he gathered from my other hospital.

That could potentially be game-changing information...

Hard to believe I've been working on this for close to a couple of months now....with still nothing set in stone. 

Still, caution at this stage of the journey is prudent in my opinion....confusion has its costs....one way or the other....better to err on the side of caution as one wrong turn at this juncture could spell disaster that may or may not be recoverable.

It's funny, how my mindset has not been in the fight mode....not really....

But, slowly...as I wind myself through the grapevine of doctors and tests, I find that I've really been in the fight mode all along....just didn't equate that what I was doing was really fighting. 

But, there are many ways to fight....and despite everything, fighting is what I do best.

I've got to find a way to fight a multi-faceted battle that doesn't solely rely on chemo...I've got to get the battle out of the liver again...I don't feel strong there.  I'm already fighting a fibrotic situation there in addition to the cancer and that's a double-edged sword....I was lucky to walk away the first time. 

It limits my chances of ever having a resection....which really limits what I can do there...and how much existing liver can take. As I said, there are choices available, but many will not be for me based on that condition.  The good news is my liver functions are still pretty good, so it's a functioning liver fortunately....but you always wonder where the tide will turn?

Even in a big metropolitan area where I live, the hospital facility options are not that readily abundant....Baylor is the only other big name there....many type of private cancer clinics.....but chemo is chemo....and a dispensary is just that.....a dispensary...you can get it anywhere.

The key to victory lies in surgical intervention....

I've got to find a way to qualify for that....

So, it's another busy week of being poked and prodded...hopefully, the procedures will go without a hitch....and we'll gather important life saving info by doing them.

Then, maybe I can decide what to do.....and finally have something to say.

I'm so sorry to have worried everyone...I just thought it was best to stop talking until I had something to talk about.

Now, that would be a first, wouldn't it?

LOL!

Thanks so very much for all of your concern about me!!!  You folks are out of this world:)

-Craig

 

 

 

 

LindaK.
Posts: 322
Joined: Apr 2013

Thanks for the update, we all care about you....

I'm sorry you are going through so much, it's exhausting to me just reading it.  Keep up the fight and keep those doctors on their toes.  I'm glad you have an ally in your one doctor.

Linda

janderson1964's picture
janderson1964
Posts: 1647
Joined: Oct 2011

Please don't ever stop talking. It's when you stop that I get worried.

lp1964's picture
lp1964
Posts: 857
Joined: Jun 2013

...I believe you are in the best fighting mindset you can be. Despite of having limited options you know exactly what those are and their consequences. You seem cool headed yet determined, knowledgable and know your body more than anybody. That's the best combo to fight with.

Keep it up till next time Craig,

Laz

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

you had us worried there, dude!  Thank you for checking in and letting us know what's up.  You've got a road ahead of you, that is for sure.  But if anyone can travel that road and come out in one piece (more or less-most of us cancer folk don't get to go through life as a "complete set"), it's you.  Now try to stay on the radar a little more, will you?

Lots o' love~AA

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

You know we were all worried about you.  Glad to see you back and at em, and looking for the surgical options, as you say the best way to go.

And if it's just about the weather, we love to have you talking, no other news needed if it keeps you in touch with us.

hugs and love to you,

Wintwr Marie

janderson1964's picture
janderson1964
Posts: 1647
Joined: Oct 2011

He just PM me so we should see a post from the lion soon.

tanstaafl's picture
tanstaafl
Posts: 970
Joined: Oct 2010

Sometimes they can fully reradiate areas at the normal radiation limit with protons.  Proton treatment sites are still rare and have several different generations available.  The newest version machines are highly targetable.  MD Anderson or OKC would be your closest and newer sites.

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