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Here’s The Deal….Test Results Now In…

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Before we begin, I just wanted to once again thank all of my friends here for their caring and compassion.  The outpouring of emotional support was incredible and I felt kind of guilty rattling everybody’s cage, before I had the answers in, but don’t think I could have bit my tongue for that long anyway with those type of thoughts swirling around in my head to keep me company. 

 

Thank you all very much for being there with me…

 

So, the onc walks in and asks me for my assessment of the situation…I told him it looked like new trouble, but the report wasn’t exactly definitive. 

 

But, from what I had gathered, I said we’re looking at a cluster of new activity in the liver in the hepatic dome - that measures 3.2 cm x 1.7cm….that wasn’t there on the last set of scans. 

 

I wanted to look at the scans this time….he asked me what happened with the MRI and I told him what had happened and that I tried to rescue the day by having the protocol changed to all CT – as it was better than nothing.

 

He concurred…

 

We looked at the new cluster of spots and sure enough, they are visible and you can see the change between the two scans as we had them up side-by-side.  The rising CEA was his trigger for concern here.

 

CEA for me seems to be valid for liver – and worthless when it comes to lungs…so the rise (while not sky high) was disconcerting for both of us.

 

But, he told me that still it was not definitive at what we were seeing…although he highly suspects – as do I – as many of you might as well…

 

So, I said, well then the next step must be more testing, right? 

 

Perhaps a PET, I suggested? 

 

And short of an MRI, he agreed with this approach….so, now we’re scheduled for a PET scan next Wednesday first thing in the morning.  I asked him if the difference between any SUV values would be indicative of anything? 

 

Like, if it was 2.8 or 7.2 as examples…..would this determine anything? He told me it would be either – Or……either a high value or no value…not much in between. 

 

Next, I asked him the next most logical question…is the area treatable without chemo?

 

I asked him about TACE as an option?  He said, yes they do chemoembolization there at my facility (good news)…..but felt, that the response was low there and not appropriate for my situation. 

 

We talked about Sir Spheres and Thereapheres…I can get those at my place too…

 

I asked about RFA again….and he said we’ve got to be very careful with my liver…I’ve got stage I fibrosis and have had all along….it’s the reason that liver resection got ruled out after they originally opened me up…..and had to switch over to RFA on the fly.

 

But, while RFA remains a possibility, we’d have to revisit it to see if I would qualify….he told me the quality of my liver might be further impaired by a procedure like this – this time. 

 

I believe he said my right lobe looked pretty good, but the left one….he’s not sure how I would deal with that potentially. 

 

So, I moved next to Cyberknife – what about that I said?  I had that done on the liver too and locally, it was a temporary success….would later recur….

 

And he said, Yes, this would probably be one of the proposed methods to deal with it.  And it would be SBRT radiation…..stereotactic. 

 

I took a minute to talk with him about presacral regions and T11 and T12 calcifications.  And I said this is where the radiation was done on me right?  (9-years ago).

 

Yep…

 

And that it’s part of the price we pay for trying to live…what I’ve said all along…the ramifications and fallouts from our treatments continue to dog and haunt us every year we make it. 

 

I told him I had been having increasing pain in the lower back and could no longer sleep in on weekends….the pain literally drives me out of bed, it hurts so badly. 

 

And I told him about my hips and the associated pain there….I’ve got Avascular Necrosis, which is joint death of the hips due to an inadequate amount of blood supply to those joints.  The primary reason being radiation – followed by chemo. 

 

I knew about the AVN, but got a confirm about how our bodies continue to change from the treatments we endure – and why we suffer so, if we are the fortunate ones to keep going. 

 

Radiation – the gift that keeps on giving – all of your dying days….

 

He said we’d deal with this new activity first – and then look at the back plan….somewhere I’m going to have to get that addressed…it is getting rather cumbersome and there are days I can barely climb into my clothes to get ready for work. 

 

Well, that’s about it, Gang…

 

PET next week…..he’ll call if he sees something….otherwise, the plan is to watch and wait a couple more months….and then we look at it then. 

 

I’m okay with that…..I know that if that kind of time made a real difference for my situation, I’d already be dead…that’s the confidence that I've had to develop.  We can't always be rushing headlong into things nilly and willy...with so many years in the fight, comes some degree of sage that we develop...and of course, we hope that we were right in our judgment. 

 

So, for now, I’ll just suck it up and wait to do the next test…..we might end up doing an MRI, but I stated it would have to be open if it were going to be that long. 

 

Wish I had more news to tell you….

 

We seem to live our lives in a constant state of Flux – and that’s what makes it so hard to live in the moment – and to try and plan for a future that you can’t see – but genuinely hope for. 

 

I’ve tried to break free from the gravity of cancer that keeps me so weighted down….and yet, I find that it keeps a perpetual stranglehold on me, as it keeps me tethered tightly on a string for its own personal amusement. 

 

Actually, I’m giving cancer too much credit…..the truth is that cancer couldn’t care one iota…now if only I could get to that state of mind myself. 

 

We’ll see what happens next…and thank you all ever so much – for everything!

 

-Craig

 

 

 

 

 

 

 

 

thxmiker's picture
thxmiker
Posts: 1225
Joined: Oct 2010

We are sending our thoughts and prayers for a good treatment for you.  Keep up Living Life and positive thoughts.

 

Best Always,   mike

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Not the best news nor the worst news. Just one more worry to tuck away for another week. It sounds like there are treatment options, though.  Stereotactic is supposed to be very good & precise.

Now, about going to work naked................You finally figured out how to get back at them, didn't you?

Luv Ya,

"Mama"

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Agreed...not the best nor the worst...

The guys are being awful - I keep my head up and my poker face on all day long...

Dr. Stanley tells me to "Take It Off" - the anger, not my clothes, LOL!

I'm assured that the Lord will take care of it when the time comes for the both of them....they know what they have done...and what they continue to do...and so does He:)

That's good enough for me...

Love you, Mama.....never forget that!

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Continued best wishes for your battle as well:)

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

Good luck with your treatments,you just have to keep on fighting like we all do just don't give up.I am haveing surgery tomorrow for a spinal tumor.I will keep you in my prayers.Good luck.

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Best wishes with your surgery....let us know all about it when you can.  Will be understandably concerned for you.

Hugs big guy!

janderson1964's picture
janderson1964
Posts: 1621
Joined: Oct 2011

I am truly sorry Craig to hear this. I am there for you anyway I can be. t least you have options and thry are not rushing you into chemo. You are so incredibly important to so many of the folks here including me. I have to believe you still have a lot of years left in you. We need you here. I guess it is time to dust off your climbing gear. You are constantly in my thoughts and prayers and will continue to be.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Hi Craig-I am so sorry to hear about this liver lesion, yet you have options! and many - so that is good......

I will scan (combined PET and CAT) in August and learned that my tumor load is on the right side but they are still treating the left side because of the way the livers are against the right lobe or near it? and vena cava. I really feel I am at the right place for this treatment and my Int. Radiologist explains everything and takes his time. Didn't have that at N. Western....doesn't make my situation better but having some peace of mind with treatment plan from doctors does help me sleep better at night.

We seem to live our lives in a constant state of Flux – and that’s what makes it so hard to live in the moment – and to try and plan for a future that you can’t see – but genuinely hope for. 

I can totally relate to this statement. I know I am riding the tide with being "stable" but that isn't NED, yet is NED like being stable?, who knows, only the insidious cancer. Being sarcastic here.

Once again, I hate to hear this has happened to you. I agree with Janderson, we need you here and you have certainly helped me with your insight/advice and so so many others. You have a vey special gift. You are in my prayers as all on this site and my other support group I attend monthly.

My oncologist told me he wants me on Xeloda and Avastin, as maintainence, after scans. I just hate the thought of chemo again but know it is inevitable, as long, as I agree. Anyways, this is about special you and not me, but had to share.

Sounds like you have many options and not so harsh as chemo can be for some.

Barb

Sundanceh's picture
Sundanceh
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Joined: Jun 2009

I'm still watching you closely...and so much pulling for your success!

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Hey Jeff

There are days, I could use climbing gear just to get off the toilet, LOL!

Thanks, man...

I'll be anxious about your scans, but truly feel that they will be okay.

Years 0-2 in a remissive state seem to be the worst....you seem to be caught up in between two worlds.

I never even got excited till about 21-months...and then we saw something....I dismissed it, because I wanted 2-years.  I thought if I can get that one, then that's really about the time when my scans would really mean something. 

Up to that point, they really didn't...

But, if I could have made it over 2-years, it was going to give me a glimmer of hope that I might make the next 6-months....and then maybe the cycle after that...which would have been 3...and then I could have felt better at what I thought was finally happening.

So, now the clock resets if I have to go to battle again...and one year for the cancer patient is equivalent to a decade for the regular person...

Thank you for all your support, buddy...I appreciate it.  I know you probably see some of yourself through me with certain aspects of your own cancer battle...if I have to go through it again, I just hope that you don't have to anymore.

I'll keep trying to shatter the glass ceiling:)

 

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

 

Well now, ain't that news a kicker.  :(   I guess it's time to bring out Big Billy my friend.  At least the doctor has a few options available, that's good news.  You can do it dear, the Lion will roar once again!

Love ya,

Cyn

Sundanceh's picture
Sundanceh
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Big Billy is out signing autographs!

Cool

jen2012
Posts: 1207
Joined: Aug 2012

Crud....sorry for your news...but it sounds like you have a plan and you will get through this once again.

maglets's picture
maglets
Posts: 2406
Joined: Jun 2006

maybe sometimes we just know too much....having been round too many times.  so so sorry Craig....having to start over is a great big drag.....hoping with all my heart you can just turn it down for a few whiles until you really know something more specific.....

sending love......mags

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

"Knowing" carries with it a certain sense of awareness that at times can feel crippling...and even suffocating...

There are many times when I wish I didn't know anymore...

The naivete stage of any endeavor are truly precious moments...for they carry with them that sense of newness and unawareness of what lies before them...which gives one the strength and courage to attempt something with no preconceived ideas of the pitfalls or the outcomes...

I feel there is something there...it looked pretty evident to me...but we will flesh it out...and things will be alright. 

It's business as usual for me...I'm planning the next steps and working on contingency plans for what may be coming up rather soon. 

It's only (maybe) cancer.....and I'm still going to make my 10-years....you won't wanna' miss that one, my dear Canuck:)

Sundanceh's picture
Sundanceh
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The man with the plan?

For my next magic trick, I'm gonna' pull a rabbit out of my hat:)

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

but I'm glad to hear that there may still be some hope, whether in the form of "not cancer" or in the form of "cancer that can be treated".  I know (or at least I think I know) how hard this must be to accept, after being in remission for such a long stretch.  I have scans in August, and I'm all too aware that my own period of being NEDesque could be coming to an end.   These multiple recurrences are so disheatening.  But although three always seems to be the magic number, at least in all the best tales...who says number four won't be the one to do the trick in the tale of Sundanceh?  I firmly believe that you still have the chance to get to NED for good.  And we'll be right here, going along for the ride with you.  Sending a little Seattle strength your way~AA

Sundanceh's picture
Sundanceh
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Joined: Jun 2009

Yeah, Ann

This period I worked so hard for, was just squandered by working a full-time job....and my dad as a full-time job....we've been working on our lives this year and it is a mess everywhere we look, but still we keep trying.

So, I feel cheated to a large degree, even though I got the longest time ever....it really wasn't, because I could not get this rocket off the launch pad. 

Maybe, this has not really sunk in yet, because it has not confirmed, though we all feel pretty sure....

#4 would be telling us all alot of things if we wanted to listen to the truth of it....

Chance?

Well, I've always maintanined that a Chance is all that we can ever really ask for, isn't it?

And so, I'll side with you on this one.

What would we name this battle campaign, Ann? 

No More After Four!

 At least it rhymes, LOL!

Sending you early best wishes for your August date....may it be what we both hope it will be...

"Lots-o-Love"

-Craig

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

If something pops up in my next scan, it will be number 5 for me.  Hmmm...maybe "Still Alive After Five"?  That's kind of catchy.

I know what you mean about wasting your time in remission.  I spent much of my time over the last year and a half taking care of my mom, and although I didn't begrudge her that care in any way, there is still a selfish part of me that is all "Damn!  How come I can't get some time to just relax?  Do I have to deal with crap right up to the bitter end?".  Oh well.  Maybe that is kind of how life is.  It's not crap.  It's just...life.  There's always something going on.  

Do you have that scan scheduled yet?  Lotta nail-biting going on here, waiting to here what's up.

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

I did my PET/CT yesterday.....

Waiting with you all....not even the early report has come in....

janderson1964's picture
janderson1964
Posts: 1621
Joined: Oct 2011

I am anxiously waiting with you.

lauragb
Posts: 368
Joined: Aug 2011

Just wanted you to know I'm keeping you in my thoughts, light, all that  stuff I do in the woods.

Waiting for your test results like everyone else.  I don't need to tell you to stay strong.  You rocked that

a long time ago.

 

Laura

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

I sure hate that you are having to get back on this rollercoaster.

The answer that you got on the SUV of the PET scan sounds like all or nothing.  If wishing could make it so, it would be that the CT scan just got a pic that it didn't before and that SUV is nil then check again later.

Sounds like you went into this appointment with all your options in mind. 

No matter what, remember that we are all here for you and cheering you on.

Hugs nd love,

Marie who loves kitties

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

know what to say as tears are streaming down my face....(((((HUGS))))) my dearest friend...Godbless...johnnybegood

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Wish you didn't see this news...

Your tears are being re-purposed into the form of big ol' hug...

And I thank you for them, dear friend!

Now, no worries....doctor's orders:)

Tongue Out

Chelsea71
Posts: 1170
Joined: Sep 2012

Well, I am relieved. It could have been worse. You know, to some extent, what you're dealing with. It appears to be in your liver only which means that they should be able to target it directly vs systemically. You're just going to have to dig down deep within yourself and muster whatever it takes to put this next chapter behind you. You set an example for people within this group and we rely on you. You will share your experience with people here (in your usual eloquent style) and we will support you every step of the way. I just wish you didn't have to go through it again....You don't deserve this. None of us do.

Chels

LindaK.
Posts: 320
Joined: Apr 2013

What Chelsea said.  I was so anxious to hear about your appointment.  Sounds like you have a great onc and together you will develop a plan to deal with whatever is going on.  Thanks for the detailed update, I learn more from you each day  :-) 

Linda

Sundanceh's picture
Sundanceh
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Joined: Jun 2009

I think you and Jeff were more anxious than I was, LOL!

We'll see what we can see....and then, we'll know what to do:)

 

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

You know, Chels...

Sometimes, I think that I raised the bar too high for myself...

I had forgotten that people are watching...and they are looking at  how you comport yourself and handle constant adversity...

Perhaps, through others - we see what we want to be. 

I've always underestimated the impact and responsibility that comes along with that.  All of us are looking for living examples out there to help us gauge our reactions and thought processes to help tell us if we're staying in between the white lines.

I'm no different in that regard either...

But, I felt a hush over this crowd when the news broke....and for a moment, I thought what have I done?  Have I destroyed Hope for others?  Or am I just telling the real-life story of Cancer?

When the BB story publishes officially, I'm going to post a link.....and then try and enjoy that the 2nd time around....we were all robbed of that good news...and I think that's still what upsets me the most.

Thank you as always and my best to Steve!

You too!

-c

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

My dear friend,

I am sending love, prayers and hugs your way.

I am also thoroughly pissed off, so I am sending  strength and determination.

Love you,

Judy

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

For some reason, I'm not really angry....

In a way, right now, I'm not feeling much of anything.....it's odd.

I think, perhaps, because I'm in my business mode of cancer...

I'm really more disappointed...thought that liver involvement was behind....I had gone 5-years clear there. 

And I'm disappointed that after I had worked so hard to get back to the starting line, I may have to start back at the end of the pack again...

This scan was supposed to make me feel good about making it 2-years and a clear or stable report would have given me hope that I finally might join the multitudes who are now going 3-4-5 years with all clear scans....

And while we don't absolutely know just yet...I hope to find out more next week...but, still I feel the weight from it all...but am just approaching it as another business deal.

Maybe, I'm still numb to the fact and despite thinking about a great many things, I haven't had time to properly assimilate what I'm supposed to be feeling.

What am I supposed to be feeling?

How should any of us feel if we were facing cancer the 4th time?

Maybe, its Enlightenment telling me that this is the way it will always be for me...and while I cognizantly recognize that on the surface, perhaps I'm not accepting it on the inside.

Or, maybe I've accepted it, but don't really want to acknowledge its existence....because, then that makes it real.

And, maybe, I just want it all to be done. 

Having it made it now 9-years, I can tell all of you with absolutely certainty...

I'm tired...

I remain hopeful that this battle will not drag on too long - and be chemo free...

All in all, I remain blessed...

Maybe, the next period of remission will be mine...

You know, Judy...secretly, I know the source of my frustration was wasting 16-precious months out of the 24-month clear period, working on my dad's stuff....I knew it then, but couldn't change it.

I justified my feelings by saying the timing was good and bad....good that I could do it in a remissive state....and bad, that I HAD to do it in a remissive state.

I guess I feel like I was robbed....

Send me anything you can - but honestly, I'll settle for a ham sandwich if you can slap some of that in between two pieces of bread with a slice of cheese, LOL!

You'd have my undying affection:)

But, you've already got that:)

No worries, gal.....

Love/C

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Have you in my prayers.  Wolfen had a good idea there for the back pain.  Hugs and Prayers.  Kim

 

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Let's hope next week provides more clarity....

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

...you are so eloquent!  And so much in control of your treatment plan...I am, as always, so impressed!!!

 

As a fellow hip joint pain suffered...I want to share something that has worked for me.  It may not be for you, but, as you, I started feeling like I wanted to got to work naked....could not even raise my right leg without pain...and panty hose?  FORGET it!!!

From my breast cancer, I won the osteoporosis 'prize'.  I am completely non-compliant with my Actonel (biphosphonate), and so my treatment plan was not followed...scared me with all of my peer group (year 5-10 warriors) starting to see reoccurs....so, my oncologist suggested ReClast.  This is also used to ride herd on bone mets, come to find out. 

After a freak out walking into my treatment center after being gone awhile, I settled in to the infusion, with the only thing on board (the nurse had said the sides would, normally, at worst be like Neulasta...aches for 2 days...so she suggested Tylenol before we started) was Ibuprofen (my 'snake oil drug....use it for EVERYTHING!).  After 2 days, all symptoms gone.  And I thought "OK, I have my doubts, missy as far as treatment...but we shall see".  I am pleasantly surprised at one of the sides.....my HIP has gotten better!!!  I have not had a siatica 'session' (normally an every other day occur) for 2 WEEKS!!!

Just a thought, dearest....don't know if it applies...

Knuffels, my gentleman cowboy......Kathi

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

I will mention the ReClas to the onc and get his spin.....I'll research a little to get up to speed.

AVN basically occured from a proper lack of blood flow, which resulted in partial joint death...it was stable three months ago, but they seem some subtle changes.  Even with no more treatment of any kind, it looks like deterioration will continue, albeit at a slower pace. 

From the research I have done, hip replacements looks to be the only medical solution....and the T11 and T12 has eroded to the point that it's beginning to compromise me and make things much harder than they were. 

I 'practice' yoga by just trying to bend over enough to tie my shoes...I've got to swing each leg up on the footrest of the bed and then bend over to tie them.  And you feel everything pull so tight, it feels like a rubber band about to snap in two. 

It's to the point where I audibly moan if I have to pick something up off the ground.  Getting in and out of bed is an olympic event anymore. I have to be very careful how I move, some days it feels like the next step will be your last and you'll end up in a wheelchair...had that happen in a Walmart....and was trying to figure how to get out of that big store and back to the car without drawing unwanted attention. 

I think that this points to the fact that just because we do or did something....and didn't really feel or notice it then....does not mean that we won't pay for it later on down the road.  After all, we can run, but we cannot hide. 

 One of the biggest challenges to the entire cancer experience is living past the prognosis we were given - and then if we do, how do we deal with the inevitable fallout?  As you know, one of the biggest keys is finding out how to manage our lives when all is said and done.....or not....

Thank you for your suggestion and I will mention this to him to see if it would be an option that might apply for me....thank you for the info:) 

Give my best to Beau:) 

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

...I know I sound like an ad for the stuff....but I am amazed at how it continues to help my hip (rad damage) and joints (chemo...I think).  I figured after 7 years, nothing would work...and, dearheart...I do NOT do yoga....*grin*!

As far as living past our prognosis, it continues to surprise me...With my beau's decline with his heart, I guess I have the answer as to why I am still around *grin*...

As you know, I seem to have a saying for everything, but the one that suits this is 'It's not what you are left with, but what you DO with what you are left with that makes all the difference'.....and you were one of the major inspirations for this, my darling gentleman cowboy!!!

I will pass your best on to my beau....it is down to waiting for the new heart....sigh...and hoping that all of the drugs/procedures, etc will keep him alive until then...sigh...

BIG hugs, Kathi

steved
Posts: 836
Joined: Apr 2004

You have been at this battle so long your responses now are so acadewise and wise  that I wonder where youremotions are at?  It fclose very close to home what you are describing and similarly foundnix want to knthat've facts and make the decIsions and just get on With it.  I do hear hope in your plans which is great and knowledge will take you a long way.

 My thoughts are wIth you, Just don'tforget this is a huge emotional challenge, not just a physical and academic one. 

Steve

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Not sure if you'll come back for this response...I've been thinking about it since you posted it.

Sometimes, without even knowing it, we can set the bar high for ourselves, Steve...and it's all too easy to forget that folks are watching how we comport ourselves in and out of the cancer world.

I think for myself, I try and be business like as possible in my approach.  As you say, I've travelled a good deal of the path over my years in action. 

But, I think it's also more that I don't want to destroy Hope. 

When we see old-time veterans, recur and recur...it sends a signal to the rest of the community and brings some awareness into sharp contrast for others, who are looking at your longevity and success and using that to help themselves stay in the game as they look for long-term examples to give them hope that they can attain similar goals. 

Now, here's a story...

About three years ago, I met many of our members at a shindig when they came to my town.  One night, my friend pulled me to the side and wanted to speak to me about a very poignant topic.  (She'll recognize herself if she reads this:)

But, she had been clear for many years (to the clinical point of being considered clear) and told me that if she got cancer again, that she didn't think she would mention it to the group.

I thought about that one for a few...

And told her I thought that would be a mistake...yes, it might hurt people with the news of a recurrence....and it might put a dent in folks spirits, when they see someone who had gone for a spell and then recurred....

But, we're telling the story of Cancer here...the true story of Cancer....and with that, comes some responsibilities to tell the truth...because, we have to learn...and we always learn through other's real life examples, don't we?

BTW, she never recurred....and is still doing good:)

That's part of what I'm saying, at first when I hinted that something might be up, I felt some of the air leave the room....it gets folks thinking about their own situations.....when they see longevity falter, it sends a wake-up call to others. 

I felt like I had done a disservice to the community....because I know people are watching...

I watched you....and I watch Phil....

Your story took some of the hope out of me there for awhile, but I was glad that you posted it....I saw 7-year clear go away and I've witnessed what you've gone through. 

But, it's the story of Cancer....and your story (among many) has made an impression on me....for many reasons....

I think I handle things much like you, Steve....we both seem to approach it from a business standpoint.  And I suppose, at this stage, that's the best way to handle it.  To disassociate any undue emotions for a later time...

And folks are looking for folks not to get rattled...they want to see the way that the old vets handle continuing adversity in their struggles...

I'm reminded of a scene from the movie, The Alamo, circa 2004...

Billy Bob Thornton is playing the role of Davy Crockett, famous Tennessee frontiersman, who joined the Texans and died in the fight in defense of the mission.  He had a reputation as a crack shot marksman.

He whimsically reminisced (just before a big fight) that he wishes he could just be a regular kind of a guy and not have to live up to the reputation he had created. 

And then he said, "This Davy Crocket fellar'....they're watching him..."   (It was a very poignant cinematic line).

And sort of like the movie, this Sundance fellar...they're watching him too...only I forget that sometimes....

I'm okay, Steve....I think because, I'm not envisioning as hard a fight as I've had to fight previously (hopefully).  A nice short skirmish, instead of a full frontal assault would be good for me at this stage of my battle. 

That's probably contributing to my calm demeanor.....and I almost wanted to immediately crumble on hearing that cancer may be back, because I'm just tired of dealing with every nuance that it brings with it. 

There's probably a part of me that is numb....and while I cognizantly acknowledge it....I haven't fully accepted that it's truly there....because I don't have the test results back to confirm that. That may have something to do with it. 

And of course, I've just been at this awhile....and understand the patterns of how cancer lives and operates...I thought a fourth recurrence would be devastating....but it will depend on how much we have to fight....and what we fight with.

You know that the Human Experience is at the heart of my practice:)

Thanks for checking in.....I didn't want you to think I was leaving you out....you just made me think about things with your observation. 

Still wishing you all the best...and my thoughts have drifted towards you on more than one occasion:)

-Craig

 

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

I could have been a doctor, LOL!

My onc humors me like he did the other day when he asked for my assessment...LOL!  I've always joked that it feels like two 'colleagues' discussing a patient case - only it's mine:)

He doesn't patronize me though and seems interested in the theories that I bring him....and the stuff I've been able to tell him about on the board.  I think he enjoys hearing it.  Many of his patients probably don't provide much input

(BTW, he did tell me that I was one 'on a very short list' of his patients who had survived 9-years or more. He said that was more important than the 2-year remissive streak....)

The good news is that my facility looks like it handles many of the options out there...that's great news for cancer patients as I've said, we're an NCI facility now...and should be considered the MD Anderson of North Texas...I already know that we are:)

Even with all of these options, there may be several unavailable to me due to the state of my liver...I've got NASH with stage I fibrosis, so the situation is somewhat tenuous on what approach we would take. He said we'd have to be very careful as we move forward here.

What's interesting is that even when you have done something before....and then you can do it again....your body may not be able to deliver....as I've said, you can only beat this thing for so long - something has got to give.

Liver resection (at this time) is absolutely not on the table...it wasn't good five years ago...and I can't imagine it improving....as everything does degenerate. 

If I can clean up my liver....surgical resection might be a future option....

RFA is possible, but that can be a pop to the liver...and the concern is would I be able to do one of those.....if I could qualify, that would probably be my first choice....my second choice would be SBRT as the targeted approach...doc seems to think we could get clear margins.

I absolutely stressed to him that I do not want to fight a chemical battle...not even mop-up....what is that anyway?

If you do recur 4x, what exactly are we mopping up? 

I've learned as you get older in the battle, that you have to fight smarter - not harder.....

Of course, he said we'll pull your spleen out and then you can do chemo...:) 

For now, business as usual...

I'll be interested to see what the PET results tell us...

Have I ever told you that "Story Matters Here?"

LOL!

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Sorry you have to start dealing with all this again....I only know what I have experienced but had good results with both sir spheres and SBRT. Any questions with either one, let me know. Thinking of you and wishing the best.....~ Ann

 

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

It's not definite, Ann, but it's leaning towards it and I hope to have more information next week after the PET.

I've done all kinds of radiation....external, Cyberknife, IMRT.....and SBRT is like Cyberknife, so I'm not too worried about anything.

I'm glad you did well with the Spheres...I know you and one other lady who have done well.....one of my first friends here did not fare so well unfortunately and she passed shortly after the procedure....went into a coma. 

I understand the risks....but he does not appear to be leaning this way.....looking like either RFA or the rads at this point.

Thanks for your support and I'll be just fine!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you will find a way, i was interested that tace was poo pood, thats life. different opinions everywhere we turn.

hugs,

pete

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

My onc didn't dismiss TACE....and said they do it at my facility (NCI), which was terrific, as it offered an option for cancer patients in our area, without having to travel somewhere else for the procedure. 

His medical optinion was that he felt that it would not be appropriate for my condition.  When you read the stats on it, it's not a home run by any means, but good that it is offered and available.   

If this area is contained, then RFA or SBRT looks to be the most minimally invasive methods to choose from...

But, there was no Poo-Paa from my onc....I just wanted to clarify that. 

We had a frank, open discussion about all the options....and I took the lead in the consult and basically led the discussion. 

He listened to me intently and acknowledged my concerns and seemed geneuinely interested that I've got my head wrapped around this and was aware of available treatment options.  I was able to lay out this discussion in the cool, calm manner that I always approach my cancer fight with. 

I treat cancer like a business deal...

 And I will get it done...

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

It must be hard to just wait and watch. But for some reason, I just have so much confidence in your ability to knock this back down again with Cyberknife if you need to. It worked for you before and I believe it will work for you again. Hang in there. I'm pulling for you with all the others.

Sandy

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

For some reason, the waiting is harder this time around...

I think it's because I've been in strong fight mode the past 3-years with my last cancer....partial recovery.....then all of my dad's mess for 16 precious months.....and then just trying to work on all the things that were neglected in our own lives....and just beginning to think that there may be a life after cancer for me....

And so, I'm a lot less patient than I normally am......I'm okay now....I had the breath taken out of me last week....now, I don't feel it...I'm into the business side of it now.

I just want to know what and where it's at...and then get on with it...

I've got to fight smarter - not harder, this time around....

I hope to know more next week...

Thank you as always:)

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

With tears and a heavy heart, I am so sorry you may be back in the fight

Hugs - Tina

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

"I know."

And you know, it will be okay....my toes are always tappin'...

Cool

Thank you for checking in - always nice to see you....no worries, ok?

buckeye2
Posts: 427
Joined: Jul 2011

Craig,

I still stalk the Board sometimes and saw you are going through a tough time.  You helped me through several of those and I wish I could use words to help you through yours but lack the talent.  Sounds like you are being proactive about researching a good treatment plan and that's good.  I hope whatever treatment is decided leaves you able to both enjoy life and continue to help others.  You are a class act!

 

Lisa

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Your presence says more to me than words ever could:)

BTW, just so we know that 'some' good can come out of cancer....and because, you might not have seen the post prior to this one...and because, you were aware of my writing....and how I had a dead-spell there for 25-years thanks to an errant professor against a fragile ego that I was carrying back then.....

One of the ladies here, Jen2012, showed me a link to Coping Magazine - this is a major publication as it turns out, Lisa:)

So, this was significant...and a milestone achievement....took a couple of years and the help from a community member to help me realize that something I wrote finally will make it to print in some fashion. 

Anyway, they had a "word-limit" for their submissions.....go over the number....and adios...

Of course, that didn't stop me...I've never been bound by rules when I don't wanna':)

So, I wrote her a couple of stories...and re-wrote each of them at least twice to try and shrink it enough to fit their format....one of my articles was double the length.....and the other was three-times the minimum...

LOL!

But, she did know that, because I told her in advance of sending anything in...but, she saw something...and her and her staff picked one story to be published in an upcoming release of their magazine - "The Story of Big Billy."

Out of the other article, they grabbed 3 quotes from the other article that they will use sporadically somewhere among the issues...they don't always do quotes with every issue. 

Here is the link for you....if you ever want to check it out:) 

http://csn.cancer.org/node/259864

I've thought about you and wondered what had been going on....I happened to catch a post and wanted to let you know that my thoughts are with you and your husband...I know how hard it has been for you both.

I'm certainly glad to see my old pal - $I2

As always thank you for your kind words and support....

-Craig

 

 

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Dear Craig:

I like your way of treating cancer like a business deal but still do not like that you have to deal

with another reoccurance, as part of the negotiation!  The options sound good and hopefully will be easier than previous!

I have my second Sirtex procedure to attack the left side of the liver on 7/2. It really has gone

smoothly but I know all those tests will occur at the beginning of August and who knows for me.

Sending positive vibes and a big hug - we all look up to you and you have helped me so much!

Being a Texan, too, I know you will knock this down, guns loaded, spurs, cutting the deal, whatever it takes-

Barb

 

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