"???" - Scan Results Confirmed? *** UPDATE ***

Sundanceh said:

"Slept It Off" - Update: Thur Mar7th

The radiology doctor sent this reply through my doctor...and I picked it up:

"I do not believe this is typical for a metastasis and favor this is post radiation change."

This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

I wanted to thank everyone who has commented. 

RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

I'm going to be OK...

Say it with me..."He's going to be ok..."

With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

After nearly 9-years of this stuff....I'm tired, folks...

And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

Residual fallout really does sound like the answer here...

Craig:  9-years in June and 21 months clear? with an asterick *.

I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

Thanks everyone!

-Craig

 

 

 

Well now, that's better!     That's the news I was hoping to hear my friend.  The tears falling down my cheeks right now are those of happiness for you.  Dang, you had me quite worried there for a few days- so no more of that, ok? 

Hugs,

Cyn

PatchAdams said:

Cool!

That sounds much better. Whew......  9 down and another 50 years to go. Hang in there my friend! 

Big sigh of relief now.

Luv,

Wolfen

Sundanceh said:

"Slept It Off" - Update: Thur Mar7th

The radiology doctor sent this reply through my doctor...and I picked it up:

"I do not believe this is typical for a metastasis and favor this is post radiation change."

This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

I wanted to thank everyone who has commented. 

RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

I'm going to be OK...

Say it with me..."He's going to be ok..."

With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

After nearly 9-years of this stuff....I'm tired, folks...

And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

Residual fallout really does sound like the answer here...

Craig:  9-years in June and 21 months clear? with an asterick *.

I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

Thanks everyone!

-Craig

 

 

 

Congratulations!!!!!!

Craig, you are in my thoughts and prayers. The uncertainty, waiting, and simply not knowing is definitely one of the hardest things for me.  And in spite of the shadows cast from the unanswered questions WE must be hopeful and optimistic and focus on living.

God Bless!

Phil

Sundanceh said:

"Slept It Off" - Update: Thur Mar7th

The radiology doctor sent this reply through my doctor...and I picked it up:

"I do not believe this is typical for a metastasis and favor this is post radiation change."

This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

I wanted to thank everyone who has commented. 

RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

I'm going to be OK...

Say it with me..."He's going to be ok..."

With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

After nearly 9-years of this stuff....I'm tired, folks...

And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

Residual fallout really does sound like the answer here...

Craig:  9-years in June and 21 months clear? with an asterick *.

I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

Thanks everyone!

-Craig

 

 

 

barbebarb said:

Hi Craig
Always look forward to your posts and kind inspiration as well and candidness to all.

This is great news and you give us inspiration to keep moving forward.

Barb

Yes they are rattling the cage, let them. Sit back for now and relax. When the time comes and you do the MRI or scan, THEN

you will have to pay attention to what they outcome is. For now enjoy the next 3 months, stress c an kill you too you know.

We just lost Buzz, he always said.. it is what it is.... We all hate the scans but we need them, mine is up soon too and yes I am scared, anxiety galore, pain in lower back, but CEA still normal.

I tell my body every morning I am fine, you are doing great and you are healthy. If I believe that my body better listen to me.

If you feel good that is all that counts.

So Craig, I am telling you, you are doing OK, all will be good, specially with all the praying I have done for you.

Love you, hugs, Marjan

Sundanceh said:

The Road to Financial Ruin...

I understand completely, Alex. 

I have to make sure the doc orders a CA19-9 blood test I like to review or he might omit ordering it.  Alot of times we just have to follow up it seems.  I have to constantly change most of my appointments even when I go over with them before I leave what times work best for my working situation. 

It was a frustrating visit...but they are a teaching hospital and they get assigned duties over the course of the year and this can cause confusion with appointments scheduled...one mishap or extra delay and it follows suit like tumbling dominoes...we just got caught up in a hurried short visit...but perhaps either he or his aid that day contacted the rad office for further clarification and we got the last piece of the puzzle (for now).   It just wasn't a proper visit and we didn't even look at scans or bloodwork....I checked out the blood that evening when the results came online. 

"It is what it is..." LOL!

The financial costs to surviving a cancer battle are the untold part of the equation when you're first starting out.  Nobody would listen anyway, because it's balls to the wall as the fight starts and the cash registers start ringing.

Now close to my 9th year...I've probably made the "2 Million $$$ Club" with retail cancer expenditures during that time.  And even with insurance (be dead w/out it and is the reason I still work) my out of pocket for that tab has torpedoed me on many occasions and it's been very hard just keeping up with that every calendar year. 

It has influenced my decision making process on two occasions during my cancer fight...

A few years ago up here right after I first joined, I made a huge, criticial mistake due to lack of finances (at that time)...

I thought I was smart enough by then to monitor my cancer through my bloodwork for awhile and save on some expenses that way...I had about 10 bills at that time from all sorts of medical facilities and it was around $900 a month out of pocket to keep up the minimum payments...I couldn't meet those regularly and feared running up any more...so I cancelled all of my scans...and even a lung surgery we had scheduled.

I had posted to the group about the "cost of cancer" in a long fight...I did it to help show the group what can happen the longer you have to fight the cancer fight...not for the one year you think it will be and then over...but from the long term perspective (which was just 5-years then).

It's in the archives..."The Road to Ruin" - At the Financial Crossroads...

I was just frustrated that once we get on the Medical Treadmill...it is so very difficult to get off...and stay off...so I talked openly about it. 

One of the ladies here had recently lost her husband to cancer just a couple of months prior to that post...and by happenstance, she was visiting the board that day and saw that post and pm'd me out of the blue wanting to help me pay for that scan that I had cancelled....it was for $753.00. 

I politely declined her generous offer and explained that I could never accept that kind of help, especially in light of her just losing her husband to the disease...

But she persisted...and explained that she felt her and her husband had done everything they could to battle his cancer...and that she did not want me to get down the road and look back at this critical crossroads....and KNOW she could have made a difference.

After much soul searching, I hesitantly accepted her kind offer and told her I would pay it forward anywhere I could...and she told me that she had been watching me for awhile and already knew that, as she read what I was trying to do...and that was a part of what also moved her to reach out...and there was a part of her that I knew needed this kind of a win against a cancer that had taken so much from her through the loss of her husband.

I called her "Angel" and that story was a nice story on this board at that time...it personally meant so much to me that Angel got huge recognition for her compassion and kindness to a stranger when I wrote up her story in my book. 

Now, I've settled with some collection agencies on prior bills...and some we lost and they ruined my credit completely...and I'm holding on to the half a dozen active ones now making monthly payments...and putting a plan together to try and pay out the smaller ones.....BUT the 'new ones' coming will replace those...

And so it goes...."it is what it is..."

We've got lots of house repairs on the books for years...cars need work too...and you just can't shake enough of those leaves off the money tree, can you?  You just watch it break...and then you learn to live without it, don't you?

But, that leads to depression I've found...your whole life just bends in at the middle and you feel as though you're gonna' break in half trying to hold onto it.  And everything is so expensive and many times you don't really get the value in the repair that you do save for...all very frustrating for a society that is increasingly geared towards getting the money, but not necesarily delivering on the promise of said payment.

The journey is long and expensive...I certainly can't say with any real conviction that I'm worth 2MIL...each day that I get up, I just try and so something for someone that helps pay the bill for me still being here...

It's a funny thing what they say, isn't it, Alex...

$$$ doesn't buy happiness...BUT $$$ does make problems go away...and therein lies its greatest benefit....to have just enough to trade for goods & services to keep us alive one more day than we had yesterday... 

Thank you for posting, Alex...and I'm sorry your CEA is up...and that your having pain the way you describe.  I'll remain hopeful for good things for you and your family....I'm just so sorry that everyone has to fight so hard for their survival...there are so many components to this battle...Physical / Mental / Emotional / Financial.

All we can try and do is slay these Four Horsemen and seek out the sunlight in another day....I guess we're really not promised any more than that. " 

'It is What It Is' is a popular cultural slogan these days...

But, I'm from the old school and favor the line of thinking that goes like... "There's the Way It Was - and the Way It Ought to Be..."

-Craig

Hi Craig....I sure hope things get better for you! We do all have to struggle and worry so much and it is just not fair sometimes! They have been "watching" a spot on my lung for over a year now.  They tell me not to worry about it .... but as you say, it is not their cancer. To find peace is not easy while we are in this fight...but I find there are moments.