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Sundanceh - can we see your original post for your 9 yr anniversary?

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

So sorry to hear you may be facing another recurrance.  I know how that feels, as my CEA is slowly rising.  The red light green light analogy is good.  Anyway, I would love to hear your thoughts on why you went so long without a recurrance.  I can barely make it a year, and my 6-year anniversary is next week.

Hope whatever it is they can do surgery and get it out quick!

By the way, you are so positive on this baord that you should not apologize for being upset.  Anyone would be and here is the best place to let it out so you can get to the pissed part and fight!  Take care, Traci

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

It's at work....I could do it Monday when I get back....

Tell you what we could do...

So, as not to confuse the community...we can use this post for that one.  Staying with your title will keep it clear for anyone that might read it.

Maybe some good could come from there after all...

-Craig

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

It just might help someone and perhaps allow you to celebrate 9 years of living as well.  I look forward to seeing it.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I looked back through it this morning...

True to my word, I'm going to pin it up on the board for you - and it is completely as I wrote it - no edits. 

The last two years were the longest tiime in my 9 that I've gone without having to watch or do something....so, I get where you're coming from on your 6-years....that's where I was before catching this last wave....I rode it to the shoreline as far as I could get.

I understand how painful it is to reach - and not attain. 

And I've also found that while we yearn for the taste from the fountain that so many have drank from - we find tha the tasting of those waters can carry with it... a thirst that we can never seem to quench:)

This one is for you, Traci...and thank you so much for your interest....congrats on your six-years too! 

I've got a soft spot for the long-time active fighters...

There's a different mentality and mindset from actively fighting 6-years with recurrence(s) vs just being diagnosed and fighting the one fight and living the 6-years. 

But, you already know that......

And now, without further adieu.....

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Per Traci's request, I have posted what would have been the post that I had originally planned.....

So, as not to be confused with the one I already opened, I have posted it here to keep it separated and to not further confuse everyone.  After reading this again, I feel rather foolish and embarassed now. 

Silly Rabbit - Trix are for kids...

 

“Nuthin’ Finer Than Being a 9’er” - The Who, What and Why’s Of It All

 

Numbers can be deceiving, can’t they?

 

But, this one isn’t…

 

I’m a real number…and a real life human statistic…who has finally made it to the 9th year leg of the race and finds himself in the eye of the longest remissive streak of the entire nine-year ordeal.

 

One does not expect themselves to be ‘winning’ the battle against cancer in the latter years of the fight and the current remissive streak @ (24 months) is certainly something I could never envision – quite frankly, because it has never happened to me before.  

 

Let’s talk about this…

 

When I first started, I harbored all the normal thoughts that cancer patients do when they first start out on their journeys.  Full to the brim with naïveté, I earnestly did whatever the medical community told me to do, so I could get this all behind me and move on.

 

Recurrence(s) would soon remove the colors from my sight – as red turned grey and yellow white – and I was left to decide which was right – and which was an illusion. 

 

Along the way, I’ve had mistakes made for me by my medical team – and I’ve erred and blundered a couple of times myself,  as I feebly negotiated the maze that cancer is. 

 

But, through all of that, some pretty big battles have been won that have extended my longevity out beyond the limits of what my vivid imagination ever envisioned we could. 

 

RFA on the liver was a huge victory and a game changer (even though I recurred).  As the operation unfolded, the surgeon took one look at my liver and made the decision that removing 80% of my liver for a resection would place me in peril of dying on the O/R table. 

 

That’s the one that we try and avoid…

 

Left unabated, that liver tumor would have eventually spelled the end without the RFA procedure – as we were unable to proceed with the liver resection as originally planned, so this was a big turning point.   

 

We also made medical history in North Texas by being the first surgeon/patient tandem to have the da Vinci robot surgery done on the lungs.  The success of the operation netted my surgeon the accreditation he needed by operating on a live patient with manufacturer supervision and support in attendance, so that he would be certified to operate independently afterwards.    

 

And more importantly, that success netted St. Paul Hospital a brand new, state of the art, 1.5 M dollar da Vinci robot indoors at their facility, instead of having patients go to the neighboring hospital, where I had the surgery performed.  

 

BTW, I was out searching and came across the link to the actual magazine where the story was written up.  The old-timers will recall that I was able to secure 100 free magazines for my ‘service’ and we took up a collection for shipping and handling and mailed them out to community members here.  (at that time)

 

Here was a funny story that went with this…

 

They were trying to decide between me and Frankie Valli to see who would end up on the front cover:)

 

As you will see, a computer chip won the honors…..Frankie went to the back page of the mag….and I ended up with the Feature Story, LOL!

 

My legendary surgeon and our story are on Pages 5 & 6 for anyone wanting to read:)

 

 

http://www.utsouthwestern.edu/media/200-Administrative-Offices/619443St.-Paul-Fdn-magazine.pdf

 

 

I have fought a conventional western medicine battle over the nine-years…the highlights include:  51x chemo / 55x radiation / 3x Cyberknife to liver / 4 major surgeries: rectal, liver, and right lung x2.

 

I’ve never gone longer than one-year without watching something new, that developed from metastasis…..and this was in my first year, heading into my second. 

 

So, to be sitting here at this point, 24-months out, and in a clear state pulling into my 9th year…..

 

What’s really happenin’ here? 

 

 Hey, if I knew that one, I’d write another book that would never make it to print, LOL!

 

Actually….I do have a theory about this…and I want to talk with you about this phenomenon. It’s clearly speculation at this point, though.   

 

Last time I reported, I did not get a completely ‘clean’ scan that time.  There was some innuendo written in there that left the interpretation a little bit hazy.

 

Prior to the consultation, I had read an online copy of my CT scan report and concluded (myself) that what they were reporting was residual and collateral damage and post surgical and treatment changes associated with the areas around the liver that had caught their attention. 

My onc had agreed (sort of) but had kind of hem-hawed inconclusively at what I had suggested from what I had read in the report. It was one of ‘those’ type of consult days with trainees in attendance and appointments running way over etc. etc. 

 

We subsequently got a report from the radiologist who had interpreted the scans.

 

And that interpretation had lined up with my assessment of what I thought we were looking at.  It wasn’t perfect, but I decided to use my experience and go with what my gut instinct was telling me. 

 

That I was OK…

 

The onc saw that I had still had some shadow of a doubt on my face, so he scheduled an MRI for three-months post consultation. 

 

That date came and went over the Memorial Holiday – I decided to be strong and cancel the appointment and go with what I thought was the real story. 

 

That’s important, because a few months prior, I had some terrible numbing of the arm up to my elbow and shoulder and some horrible neuropathic tingling….one of our members was having several difficult procedures done for his cancer….and it got me to thinking….

 

So, we scheduled (at that time) a PET scan…

 

In essence though, my knee-jerk reaction proved to be just that….a knee jerk reaction…and the payment plan for that PET scan has now been extended out through 2015 for my out-of-pocket portion of the services that were rendered – due to my insecurity.   

 

I didn’t want to put myself through that again….at some point, I knew I just had to trust myself.

 

Besides, I still feel mostly confident that I’m mostly okay…

 

So, we’re going to try again in three-months in September with a CT….that would make 27-months clear (then) and we’ll see what the interpretation reads like at that time – and hope all will still be well. 

 

Now, let’s take a look at The Possible Why?

 

What worked Now – that hasn’t worked Before?

 

I think, in all honesty, that we finally beat my cancer into remission by staying after it as relentlessly as it has pursued me.  We finally put the right combination of licks together in succession + my positive response to surgery & treatments this last time around, finally helped me achieve this never before done milestone.

 

I believe that the core of my longevity has been greatly expanded by Surgery…I owe a great deal of my life to this life-extending and potentially life saving procedure(s).

 

I know without swinging that heavy bat four different times, I would be writing a completely different story than the one I find myself writing today.    

 

Now, even with surgery and all of the adjuvants employed, I still ended up with metastatic cancer three different times in the fight, despite any efforts I was expending towards curtailing this rampant activity. 

 

But, without surgery to remove or lessen the tumor load, it would have been a much harder row to hoe.  No guesswork there.   

 

I do believe that a part of my fight got away from me at my first practice – the onc was primarily running a geriatric practice and I was one of the youngest folks in his stable at the time.  He admittedly made mistakes and then one day just flat out told me that he did not know what to do with me anymore.

 

My subsequent switch over to an NCI facility and a teaching hospital has always played a tremendous role in how I’ve fared – and I’ve done my best to represent the hospital when called upon to do so.  I do believe in them and while I’ve paid the price for their tutelage, I have extended my life a few more years out.   

 

My surgical onc, my radiation onc, and my cardio/thoracic surgeon held me close to the fire this last fight and did not let up on surgeries or treatments.  They held me accountable and kept me on schedule with my treatments and the associated side effects. 

 

In my fight, we’ve had to just keep knocking on the door – we’ve had to keep banging – keep cutting – keep burning – and keep poisoning me, until either I or my cancer said ‘Uncle.’

 

There were a couple of key moments where I felt like saying “No Mas.”

 

And after all of these years of fighting, I was flat-out tired mentally and physically…but I persevered, because they kept using the word Curative to me – and they seemed to believe it with some degree of sincerity. 

 

So, I held on just for that one belief…that on the 3rd time, I would finally do it. 

 

The fight has been hard on my body.  I seem to do better when I can fight in waves – and then rest and recuperate – and then get called back into battle again…

 

If I still had to fight non-stop day upon day – and year upon year….well, my body would have given out long ago by now.  I can do surgeries all day long and twice on Sundays – but the chemical and nuclear battles are a much different story and have really taken their toll on my functionality as the years have rolled on. 

 

They carry the scars that the Naked Eye cannot see…

 

And while western medicine has been of some benefit to me, I have railed against it on a few occasions, as the destructive powers and forces of the ‘medicine’ have chipped away at my body, while trying to erode my confidence in my ability to take the punishment and get up and walk away. 

 

For whatever reason, this last fight has netted me the longest remissive streak of my race.  In essence, it seems that we finally cleared enough of the main tumor load, along with the floaters that are systematically swimming around looking for a beachhead to set up shop in once again. 

 

In essence, I think that my immune system was RESET…and as such, was able to take over and resume its day to day activities of sweeping and policing cancer cells and running them to the closest exit on my behalf. 

 

One of the things I did not get to mention, but feel was very relevant with the current window I find myself in, was that the scans did not reveal any “Inflammation.” 

 

Now, I’ve come to believe that Inflammation – and definitely prolonged inflammation is one of the associated triggers that can start the slide the other way.  I know for years in the fight, I kept hearing reports of inflammation. 

 

It makes sense….

 

The body is ‘stressed’ with inflammation….the Host sends out a posse to round up the rustlers as part of the body’s defense….and prolonged ‘fight mode’ of any kind, is not good for anybody or any organ or bodily system. 

 

In my view, there has to be a Fight-Rest methodology to this madness in order to achieve the success we want to have – at least, that’s been the case for me.

 

We can’t just continually keep pounding our bodies and hammering our livers over and over and day upon day, without some kind of consequences.  The body wasn’t meant to stay in the Fight-Flight mode forever.

 

After all, it was Newton who proclaimed….

For every action – there is an equal but opposite reaction.

 

Treatment should be considered in the same breath.  I’ve always maintained that treatments should be just that – treatments – and not a lifestyle. You get on, so hopefully you can get off. 

 

Though I understand that many folks are never given this option and have to perpetually fight, until they no longer can. 

 

One of the last posts I intend to write myself for the board, will be on the subject of the Aftermath…and what happens when we do the unexpected – and live past the expiration date that we were given by our medical team – and ourselves. 

 

My post-cancer life has been full of struggles and conflicts of their own right – and there was a period of 15-months, where my life was not my own and there were a lot of things I had to contend with that were detrimental to living a cancer free life.

 

And yet, I’m still staying a ½ step ahead at the moment…

 

I’ve tried and do some lifestyle changes, but don’t feel that this is what has contributed to my current status with cancer.  I would have thought that I was the perfect breeding ground for cancer to return with the challenges I’ve been working on the past eighteen months.

 

I know there are many prevalent theories that abound about cancer….

 

For myself, I know and understand myself…I really hang by a thread…the clock can strike Midnight and just like Cinderella, I could turn back into a pumpkin – and it could happen just that quickly.

 

Or, it might be possible that I stay clear…..but, it’s just so hard for me to truly believe in…even all of these years later…

 

I know I fight hard – so I can quit fighting at some point – otherwise, I’d lose my incentive over the long haul. 

 

And if they switched words from Curative – to Palliative….that would change things for me too.  I’d be crunching some heavy duty numbers and reaching a few new conclusions about how I would approach it again.

 

Because, chemically, I’m just about done….there are a few more I could do, but my body has lost a lot of QOL – there has been a lot of physical compromise with some organ systems and structures that have accompanied any success that I have achieved.

 

Gearing up again having to beat more out of myself, would have to be short term at best……life for me, is not just having my heartbeat beating….that’s just not my definition of biology.

 

Without deteriorating to the point where it really wouldn’t matter to me anymore, I just have to hope that I’m at the last stopping point in the fight.  I really don’t think another long fight would make me any better than I am right now.   I’m just trying to hold on to what I have left – with whatever time that I have left. 

 

We will talk about this in that post…..let’s try in September if scans are clean?

 

I remain hopeful that more cutting edge treatments will one day make their way into the mainstream for more cancer patients to take advantage of…..that would be covered by traditional insurance – and therefore, effectively opening the door to the masses, whose financial options remain limited and guarded.  

 

True success will only come from the ability for ALL to be painted from the same brushstroke. ~Sundance

 

But, for now, we take today for today….and today makes 9-years:) 

 

Originally, I wasn’t even going to mention this with a post…

 

But,  with the influx of new members, I felt it might be appropriate for the new folks to see that long-term extension and/or survival is certainly possible here….and that ol’ timers are still sticking around as a reminder to all of the things that cancer can – and cannot do to us.  

 

What’s Next?

 

Well, let’s keep it simple - we’ll just try for #10 now…

 

-Craig

 

lauragb
Posts: 370
Joined: Aug 2011

Craig,

I haven't been on here for a long time but saw your other post and then read this one.  I hope you keep on keeping on in a good QOL kind of way.

And that you can keep it simple, just the way you'd like, keep surviving, keep helping, keep sharing, all those things you do so well. 

 

Laura

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thank you - I'm about to pull the rip cord now and take off from work for the hospital....

Nice to see you again:)  Thanks for checking in:)

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Craig,  Your 9 years, NED or not, are an inspiration to us all.  I so understand how you feel.  You seem to pick and choose your battles and are active in your treatment.  I agree that inflammation plays a factor in our ability to fight off cancer and other diseases as well.  We are meant to fight when needed and relax when the battle is won.  I also think that surgery plays a big part in our longevity when one has stage 4 cancer, and I thank God that our doctors and surgeons are willing to fight with us.

I'm sorry that you did not make it to 3 years NED, but hopefully the 2 years rest you had will help you face the next round.  Stay strong and positive, you give me so much hope that I will one day be writing about my 9th year, I'm 2/3 of the way there.

Thanks for posting this, I think you are amazing.  Traci

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