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They Roughed Me Up With Biop(s) + Breaking News

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

It’s been awhile since I submitted to a biopsy….much less a dual procedure.

 

I had to do them as we’re just a couple of days from the 2-month mark…and short of this approach; I wasn’t going to have an answer on where…or where I didn’t have cancer present. 

 

My only recourse would have been either to go along with them idly….or hold my ground with the watch and wait routine….and hoped things got big enough inside of me to be readily identifiable. 

 

We’ve had a failed MRI attempt…..2 other successful MRI’s performed on spine and liver….a  full CT done….a PET done….met with 4 doctors…and finally 2 biopsies on the liver and the pleura of the lung.

 

And still….we don’t know exactly what we’re looking at…

 

Pathology is still out on the tissue samples that were taken…

 

I got through the liver okay…the liver doesn’t feel pain as much.

 

When they rolled me over to do my pleura….different story…and oh man…the incredible pain. 

 

Apparently, they had to go through my pleura in 2 different places and had to go in from the far side of my lung.  I’ll just say that we ‘feel’ pain in the lungs, especially the pleural area…the nerves are pretty hot right there, I can assure you.

 

They probably went in a ½ dozen times at least….about 2/3 of the way in, my chest started filling up with congestion…..it just began a constant filling up feeling….in the end, I was spitting up quite a bit of volume of blood. 

 

I could barely breathe….and my lung was filling up….and I had to expel….and they kept telling me to ‘hold my breath.’  And then they’d snap that instrument….and then the intense pain…..and then keep holding your breath.

 

Then breathe….

 

Then right in again….

 

I said I’m bleeding here, but that didn’t seem to matter….found out they gave me only lidocain at the injection site…..not the Versed and Fentanyl they had promised.  I know they needed to keep me awake to hold my breath, so I wasn’t sure why they had mentioned I would be administered that.

So, no wonder it smarted so good…

 

The bleeding eventually clotted and they held me 3 hours with a couple of x-rays to make sure things looked sealed…

 

I developed a low-grade fever 98.0-99.0 shortly after I got home….and with the Texas heat well over 105 in the shade, I was cold inside and slightly convulsing….I spent alot of time under a blanket on the couch and the covers on the bed just shaking and shivering....

 

This alternated between episodes of sweating and overheating….and kept me in bed Thursday, Friday, Saturday, Sunday and a good deal of Monday…..missing several days of work. 

 

And one of my front teeth started giving me past trouble at just this same inopportune time…the tooth is stable but the gum around it can get infected with food particles periodically and the tooth unseats and floats upwards slightly leaving the root slightly exposed and when it acts up……you forget completely about cancer.

 

It makes you just want to rip it out of your head….generally what has worked was an anti-biotic with a clinical mouth rinse…..but this time it was not working…..so I got hold of him and we’re trying one of the heavy-duty “Miacyns” now.

 

So, I haven’t been able to eat or drink much the past week or so….but appetite has been down for a couple of months anyway.  

 

Oh $hit….this just in….

 

Just got a call from the rad onc…..

 

It’s metastatic adeocarcinoma to the liver…..and as I strongly suspected….to the pleura of the right lung.

 

Wanna’ know the kicker?

 

The current theory is that the lung cancer “survived” the brutal radiation treatments….he said the beam field he used was huge….the size of my fist.

 

Anyway, he thinks that the lung cancer grew through the diaphragm and migrated back over to the liver that way.

 

That’s a plausible theory and certainly makes some sense to me.  After all, it’s been 5 ½ years since cancer was originally in my liver….and it had stayed away too….as all of my latter battles have been in the lung.

 

That certainly explains things…

 

He’s disappointed that his rad treatment didn’t work…..I was shocked, but I guess I was just naïve to believe that cancer could grow, much less gain ground on an area that had been so heavily radiated and operated upon. 

 

I told the doc I didn’t think anything could ‘grow’ from a radiation field. 

 

Just goes to show you that even after 9-years, there are still many things to learn... 

 

My other hospital lost my Cyberknife records, so we don’t have anything from that to base anything on….so the rad onc wants to consult with the liver guy and make the rounds with the other docs to be able to present me with something. 

 

I guess from 2-months of hard fighting (guess I ended up stepping into battle sideways), all we can say now is that there is cancer in 2 places…and it turned up negative in the spine.

 

Hopefully, a plan will unfold after they all consult with one another…..a couple of more days to come up with a consensus is what I hope to walk away with this week.

 

And then we can figure out the next step….

 

Hopefully, this gum/tooth issue will subside within another week or so….and I’ll be able to think more clearly…..tooth/gum pain really clouds a person’s vision. 

 

Not a great report…..but at least we know that cancer is present in the pleura….knew I wasn’t hurting that bad for nothing.  Nice to know that I'm not crazy. 

 

-Craig

 

  

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

It's a tough one. But hopefully since the cancer is in one location they can do surgery that you seem to prefer.

Regarding the tooth. As you know I'm a dentist and sounds like you either have a gum or a tooth abscess that pushes your tooth out. You should see a dentist for that because the treatment for the two is entirely different. Until then keep it clean by brushing and flossing a couple times a day and don't stop if it bleeds. It's the infection coming out. Don't use any mouthwash, but warm salt water after meals. And see a dentist as soon as you can.

Take care till next time and know that you are in our hearts and thoughts.

Laz

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I've seen the dentist...got an antibiotic mouth rinse...and the biotic scrip...has happened twice before with this area so I'm used to the drill....jumped right on it immediately.....miacyn seems to be already making a difference...the cillins didn't cut it this time.  

and cancer is in 2 locations....not 1.

 

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

Two different locations or the lung metastasis spread trough the diaphram into the liver?

Do you have a gum or a tooth abscess? Because with the gum abscess mechanical cleaning with brush and floss is more effective in the long run. You have to start with antibiotic, but it will only help 3-4 weeks.

Laz

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I hope they can come up with a good plan.It's to bad you had to go through so much pain.I am also suprised the radiation didn't work.I'm glad you didn't have a tumor in your spine,I can tell you that sucks.Good luck,I will be praying for you.

Cathleen Mary
Posts: 556
Joined: May 2011

Oh, Craig, I am so sorry you have to engage this disease yet again. I have no doubt that your are up to the task but it feels so unfair. Every prayer and hope for the journey ahead and a good outcome. You are really amazing.

Cathleen Mary

z's picture
z
Posts: 1249
Joined: May 2009

So sorry for all your going thru.  I also visit the inspire web site where there are many lung cancer survivors.  Many IV lung cancer survivors have been treated with tarceva a targeted therapy.  I realize that yours is a met.  Will they do mutation testing on the tissue they obtained to see if anything is available for targeted therapy?   I hope they come up with a great plan for you. Lori from anal and lung.

wolfen's picture
wolfen
Posts: 1191
Joined: Apr 2009

Craig,

I remember Ron saying how painful his lung biopsy was and the pain lingered for a few weeks. Even more painful to him was draining the ascites a couple of times.

One rad onc, not from MDA, also told him there was always a possibility that rads could cause the cancer to spread. At the time, I had not realized this.

At least now, you have a better idea what you are dealing with and weapons can finally be loaded for the battle once again. I know you will push the enemy back across the lines.

Keep in touch when you can.

Luv,

Wolfen

gophergenius
Posts: 33
Joined: Apr 2012

I've not had a lung or liver biopsy so far, but I read what you've written, it is painful and draining ascites is even more painful? Don't they give patients anything for the pain while draining?  Numb the area?  Put them "out" temporarily?  There has got to be something to keep an advanced cancer patient out of pain.  Please, let me know.  Thank you.

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Craig - Wow , what you've been thorugh is not for light weights!  It's amazing you can still sound upbeat with all this going on.  You're a true inspiration for us.  I hope they come up with a good game plan for you.  Hugs, Traci

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

my brother from another mother i guess what they say is true things ARE bigger in texas because you have the biggest courage of them all and maybe thats why chickie called you the lion.i have only had liver biopsy which wasnt fun but tolerable.hang tough my friend we are right here holding your big heart with ours...Godbless...johnnybegood

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

I am sorry you had to suffer like that and I am even more sorry that the biopsy were positive. But now you and your team know for sure exactly what you are dealing with. Hopefully they will present you with a plan of attack that is acceptable to you in the very near future.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Now, listen to me, buddy....

I don't want a biop for you....unless we feel that some info can be derived by doing it...

It hurt, Jeff....hurt bad man.  I was thinking of you and your decision not to do the biop in the lung...and my decision to go ahead and do it.

Our stories were different...in my case, I paid the price....but we got a confirm on malignancy...so I guess it was a draw.

I hope to finally get a plan together....devastating that the tumor grew and spread out of the radiated area and where surgery was performed....and spread back over to the liver via the diaphragm.

I would have probably stayed clear in the liver if it weren't for that....5 1/ 2 years clear in liver is almost unheard of....it's hard to get rid of there.

Now, the thought that haunts me is that my cancer will kill me know through my lungs....back over to the liver....where I have the least stability to fight a long attack.

It's crazy almost...tumors growing out of radiation!

Is anybody out there taking notes?

It's almost like the radiation acted as "fertilizer" for the cancer....

But again.....the same old question....what do you do?

Thanks as always...

jen2012
Posts: 1195
Joined: Aug 2012

So sorry Craig.

I was looking for kindle books, happened upon this one and immediately thought of you:

 
 

Children's Book: Lion Who Has Never Given Up   


Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

You got a grin out of me:)

How poignant the title is:)

The title is done in one of my favorite Fonts too:) 

I'd like to do The Lion's Roar in that Font with a big picture of my lion as the cover if I end up self-publishing my other 'work.'

Thanks to you and your good eye for things!

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Nice one, Jen!

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Craig,

I had a biopsy on a spot in/on the pleural in my right-front lung. In 8.5 years of having cancer, that was the most painful procedure,  I liken it to a sharp stiletto heal being buried into your rib cage, ouuuccch! To make matters worse, the doctor who did the procedure keep going back for more. After the 4th time I told him no more and to stop, mercifully he did. I wouldn't wish that experience on anyone. I'm glad it's over and you survived. You're blazing a trail and I'm not too far behind you. I'm paying close attention to your experience, hopefully I'll learn some things along the way.  Hang in there...

Buster...

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

They hit me at least 6x...and the last ones when it was over, I was laying there just moaning and trying to hide my pain from them...but they knew it hurt.

I finally did the same thing....I asked the doctor, how much longer?  Where are we at?  And they finally stopped....but by that time I was spitting up blood....quite a bit actually.

And bright red blood is always a little disconcerting, isn't it?

I'd spit blood out.....draw a breath....hold it...spit more blood.....and they kept coming back for more.

Waiting for the 'spike' as you put it was awful....cause you knew it was coming....and then to have to keep holding your breath through all that pain while they withdrew the sample.

The liver biop hurts to a degree....but the pleura (as you know) is very tender....and has lots of feel to it.

Congrats on your 8+ year!  You're so close I bet you can see my tail lights:)

Thanks alot....it's a personal goal of mine to make it 10-years...I could never dream of having to fight this long....and so hard....and for what sometimes I don't know.

This time I sorta got 'drafted'....I didn't charge back over the hill into the war this time, so much as I found myself standing back on the battlefield wondering how I got back there.

It's always nice to see a long time fighter...we have an understanding that can't be matched...and it carries with it a perspective that can only be gained through hard work and experience.....with just enough fortune to keep us going. 

Take care, buddy!

-Craig

 

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Craig,

I had a biopsy on a spot in/on the pleural in my right-front lung. In 8.5 years of having cancer, that was the most painful procedure,  I liken it to a sharp stiletto heal being buried into your rib cage, ouuuccch! To make matters worse, the doctor who did the procedure keep going back for more. After the 4th time I told him no more and to stop, mercifully he did. I wouldn't wish that experience on anyone. I'm glad it's over and you survived.  Hang in there...

Buster...

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I'm hopeful that we will know what we need to know Friday when we meet with onc....the other members of the team will hopefully have roundtabled by then and come up with a sensible plan.

I understand I'll be offered chemo....I just hope that after all of this work, this is not their lone solution....or I'm going to be disappointed. 

Right now, I'm trying to fight off having my spleen removed and started up on Oxy...I'm sure I'll hear the same sales pitch again....after you walk away from something like that, it's very hard to convince yourself to roll the dice again.....cause like a box of chocolates, with oxy, you never know whatcha gonna' get.

I would prefer a targeted chemo approach like TACE...but they now seem hell bent on systemic...which I understand to a point...as part of the overall plan....not 'the plan.'

Apparently, lung surgery would be a whip with all of the associated scar tissue and mess there....so don't know if this will change....if not, I was hoping for radiation here....though after failing with that last time, it's hard to have much hope there.

You know Enlightenment is a bich...and that's because it doesn't discriminate....it educates....for the good or the bad.

And knowing just carries this weight with it...

The more I think about it, the more I see Cancer now as nothing more than a bad game of "52-Card Pick-Up..."

I guess like any fire fighter, I'll just go to work on trying to snuff the flames of cancer out.....one organ at a time.

Best Wishes!

-Craig

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

It just hate that you are facing this again. You are so brave. I do have faith that you can fight it back again. I'm sorry these procedures were so painful - I had heard that they were. Have you heard of or looked into Nanoknife? Also, have you ever met or spoken to Suzanne Lindley of www.beatlivertumors.org ? She has fought this back for 16 years and is amazing. She's become a good friend to me and to my daughter. She is a great source of support and knows all about the liver and complications, etc. - might be worth your time to call the hotline. I think she's usually the one who answers the phone! She's a Texan, like you. Thinking of you and hope you feel better soon and get a plan in place.

Sandy

Annabelle41415's picture
Annabelle41415
Posts: 4229
Joined: Feb 2009

I've always thought of you as a warrior and you are going to fight this again.  I'm sure that your steam is a little down right now, but I'm hoping that you can muster the fight to go on.  Always remember, you are always in my court and I'm always on your side pulling for you.  You are too valuable to go away for a couple days.  Wishing you the best forward.

Kim

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Brave, smart, and and able to endure, yes...but not crazy.  Despite everything you've gone through, you're about as well put together as anyone I know.  I'm sorry those biopsies were so painful (really-that sounds horrible), but I guess they had to be done to get the information you need.  Now to move onward to the next step, and hopefully the development of a decent plan to deal with this sh**.  

Sending lots o' love your way~AA

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

When I was a kid, my older sister used to inflict 52 Card Pick-up on me.  I was such a dumb kid, if she just waited a few months in between each episode, I would forget the "rules" of the game.  She got me every time, for a long time, until finally I wised up, remembered how it went down the last time, and refused to play.  I'm going to keep my fingers crossed that this will be your last game too, and you'll walk away from it leaving cancer standing there with a disappointed look on its face (kind of how my sis looked that last time).

LindaK.
Posts: 312
Joined: Apr 2013

Once again!  I'm sorry you had so much trouble with the biopsies, but hopefully that will be the worst of it.  I admire your vigilence and attitude.  Thank you for continuing to share your experiences with us.  While difficult sometimes to read (and I know it's 100x worse for you going through it) it's knowledge that gives us all power.  I feel my husband and I are still in the "honeymoon" phase of cancer - 1st CT scan since chemo ended scheduled for 8/19 and followup appt. is 8/22.  I think we're both a little numb right now, not sure to be exicted or scared, probably both right now.

I hope your appt. tomorrow gets things started to kick cancer's butt again.  I know you can do it Craig!!

Linda

Kathleen808's picture
Kathleen808
Posts: 2299
Joined: Jan 2009

Sending you a huge (but gentle) hug my friend.  I wish this wasn't happening.  Know that so many of us hold you dear.

 

Aloha,

Kathleen

thingy45's picture
thingy45
Posts: 575
Joined: Apr 2011

Angry, speechless and kicking things. WHY is high on my list. You went through so much already, you are an Icon here, you take the advice and do Rad. And then ....... If I was not the lady my mother brought me up to be I would type a few explicit s .

Of course life is never fare, for none if us. As my daughter tried to tell me at the time, this is another speed bump, or high hurdle.

just when you think things are going ok s&%#t happens. Craig, like the gentle roaring Lion you are.......You can do this.

No ifs and/or buts. You will beat the damn thing back and show it who is boss. There is an army of board members here standing on the barricade with you.

Big Hugs, Marjan

 

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

oh my! what all you have gone thru & endured is amazing. i wish i could have half of your strength & endurance. keep up the fight & i will be praying for you!

hugs judy

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