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The Subject of Recurrence in Our Community

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

Well, I’m in a deeply introspective mood today, yesterday, and in fact, all weekend – thus, I have this innate need to reach out to the community.

I’ve been brooding and slowly simmering the past several days over the recent news of recurrence or probable recurrences with several of our friends – they find themselves staring across the table at Recurrence – and for the 1st time in their cancer journeys.

When I read Eibod’s story about her husband last night, something snapped inside me and I find that I must talk with you, before my head explodes – this stuff is eating me up and consuming every minute of my day…even my wife saw me dialed out last night – watching TV but my mind and heart with you – always with you.

It was well after 4am before I lost consciousness….I was writing this post over and over in my head – just laying there – with tears welling up in my eyes – all emotional because I wanted to talk to you but could not reach you.

The thoughts dashing back and forth in my mind so quick, I thought I was going to meltdown…and then the clock would gong as another hour turned over – and yet I could not sleep – all I could do was think…

So, I’ve got to clear my head and unload my heart before I bust wide open…I’ve got to work on my query letter to prospective agents next week and I need my mind cleared and focused on that task – in the hopes that one will represent me….we’ll save this for another post.

I’m not sure if I can ever adequately express what it feels like to be a long-term fighter. The reason for that is that our numbers are limited – at least on this forum.

All of the really long- term folks I have met in person are on this board. Within 5 months, the running order for the longest current fighters will look like this (for longevity in the fight)…for longest time 'actively fighting:

1. TaraHK (9-years)
2. Phillieg (8-years)
3. Sundanceh (8-years)

And there are several members between 5-7 years….and many between 3-5 years….and those new to cancer in their first and second years.

We are a diverse group, but the long term fighting group does not have a lot of numbers – though we have a lot of heart:) And the reason for our low numbers is obvious – it’s extremely difficult to make it this far…

After all, “There’s Many a Slip – Betwixt the Cup and the Lip…”

…and our lives can be turned on a dime in any 3 month period of time, so to extend out this far does speak to the fact that it can be done – and that’s it not easy to do…it is a rare accomplishment and I’m certainly proud to be with such esteemed company with every single one of you – all the way down the line.

But, RECURRENCE is the price we’ve had to pay along the way for our longevity – it seems you can’t have one without the other.

So, let’s get started and talk about the emotional aspect of this unwanted houseguest first. ..

“What does recurrence do to our psyche?”

Well, for one thing it shatters that picture we had in our heads as children – you know, the one we used to dream of? It’s the one that we are going to live a long life and end up dying of old age. It’s not the one about us getting a life-threatening illness and exiting before our time.

In the larger scheme of things, I think that recurrence resurrects the “Specter of Mortality” in each one of us – that driving fear that we have now lost control of our futures and the end can now be seen over the horizon.

That’s a pretty big spoonful for the 1st timer to swallow with the first gulp – and having had cancer three times now, I can assure you that the news does not get any easier with each successive hit.

Now, I know that we ALL approach our cancers with the mindset that we’re going to put in the initial fight – kick cancer’s *** – and then ride off into the sunset with a great story about how we huffed and puffed and blew the cancer house down.

It makes a great story to tell everyone around the campfire when you’re spitballin’ and swappin’ stories.

But, for the vast majority of us, the storyline seems to tell us a different outcome, doesn’t it?

I spoke about recurrence in its own chapter in the book…it is the 2nd longest chapter in there…with the uncoupling of events that have unfolded recently, this topic is relevant in this post as well, so here goes…

I’m really along the thoughts that we should be cognizant of the fact and to a large degree, even ‘expect’ to have a recurrence somewhere in our fights. What I mean by that is that we should prepare ourselves for the “Possibility of a Potential Inevitably.”

If the news does come down, it still lands with a THUD, but not as much if you’re willing to acknowledge the possibility of its existence and the ramifications that it represents for us.

This is not meant to be negative – just keepin’ it real here…

It still hurts though and shakes us to the very core of our foundation. It’s one hell of a rush to be sure…

Now, it does not happen to everyone of course. As with any contested event in this world, and with any subset of individuals, there are going to be folks that line up on one side or the other on the good and the bad side….that’s the nature of competition, isn’t it?

And that’s never going to change…

And while we need to hear and see the success stories that are out there – either for longevity or those that have gone clear for a long time, if we are really looking at the bigger picture – and if we’re really being honest with ourselves…the numbers are skewed and are heavily in cancer’s favor – that’s certainly true here in our world, as well.

The disparity between the number of folks who are cured or heading to a cure status pales in comparison to those of us mired in the fight for years upon end. And what compounds this equation is the fact that we stay there, or end up back there, despite various approaches to our protocols.

“Why?”

Because, if it was easy – everybody would be doin’ it.

“But, we’re not all doin’ it, are we?”

There is a reason why the medical establishment proclaimed that one has to go for Five Years – with NO recurrence…at that point, we are considered ‘clinically cured.’

Sounds easy going in, doesn’t it? But, it’s a very hard goal to attain, though it is the one that we fight for and aspire to reach in our battles. For those of us that can reach out and grab the brass ring, this kind of victory is priceless.

That’s what makes it so special – that’s what makes it mean so much…BUT even that is no guarantee of our futures as I’ve read of people here on the board recurring at later dates over the 5-year marker. Still, it is the prize we all want in our trophy cases.

But, as we’ve all learned – there is little certainty or guarantees with very much in this life – every approach that we employ is a risk and a gamble.

What we are all really looking for in the cancer world is some sort of ASSURANCE. We all want to believe that “If We Do This – Then We Will Achieve That.”

While our outcomes always hang in the balance with any approach that we take - our victories come from inside us and manifest themselves in the form of ‘our trying.’

As long as we can try – that is the only assurance that we’ve got – the one thing that remains in our control – the one thing that we feel makes a real difference.

Through my own experience and that of watching so many others, I’m down to a couple of key questions that I’ve got on my mind at this juncture of the cancer experience.

It’s clear that many of us can reach a clear state – we’ve seen many examples to know that this can be done. Yet, this leads me to the following question…”If we get there – can we stay there?”

Which leads me to the even bigger question, “Is there really anything that we can take or do to keep us there?”

This is an ambiguous question, because it can lead us down so many varying paths, with all of it holding some truth to ‘what we think’ is working or will work for us.

Let’s look at this some more…

The Recurrence Class of 2012 has some of our friends who have marked differences with regards to their approaches with their cancer fights. They are a case of polar opposites and merit the discussion between both approaches.

It does not mean that either is right or wrong with the choices made….but because they differ so much, it is a fascinating dichotomy in the cancer fight and certainly worth taking a look at…

Test Case #A:
No dietary changes were made and lifestyle remained basically the same. Reached a clear state through surgery and treatment for an approximate length of about one year…recent update reveals a possible recurrence.

Test Case #B:
Major dietary changes were made. A host of supplements introduced. Many forms of exercise employed. Other activities added like yoga, meditation, reflexology etc. etc. Reached a clear state through surgery and treatment for an approximate length of about one year…recent update reveals a possible recurrence.

Okay, let’s throw me into the mix and I’ll represent Test Case #C: (Craig)
When I got cancer the 2nd time, I made some diet changes…switched to as much organic as I could afford…exercised regularly…watched what I ate and eliminated many bad staples in my diet. Took the anti-oxidants through supplements and food…took vitamins etc. etc. Result = ended up with recurrence #3.

So, for the 3rd time, during treatment, I went the other way completely – bad diet, no exercise, no supplements, no anti-oxidants…no vitamins etc. etc. Result = Pending possible/probable recurrence?

“What is this telling us – is it telling us anything?”

I don’t know – and that’s the thing that continues to eat away at my soul. There is a member in our community who professes that cancer is not complex - just a cell fermenting trying to stay alive…

I’m from a different school of thought on this topic however. Because, to me any living organism that can mutate and become resistant to the treatments that we have on tap today – and who also has the ability to adapt to its Host’s environmental changes, certainly has my attention – and ultimately my respect as one of the most formidable adversaries that we will probably have to face in ours or anyone’s lifetime.

One thing I do know. We’re all real life case studies and statistics. I read every day all of your stories and follow them with keen interest – always have – always will.

All we really know today is that when we’re clear, we believe what we are doing was correct and made sense to us. I see the “1-2-3 years NED and this is what I’m doing…” stories and that’s all very encouraging.

I think when you can get past 3 or more years, your odds really increase….cancer is a funny guy though….alot of times he gives us a lot of rope and we run that string on out there a couple of years…and then WHAMMO!

Recurrence.

Still, it’s important to hear these stories because I feel it all helps us formulate our opinions and decide for ourselves what we feel is the best thing (individually) for us to do….and to share with the community, so that others can weigh the benefits and decide if this is a path that they want to pursue.

I’m going to be honest though – if Pete does recur, I’m going to be disappointed – oh hell, who am I kidding? I’m going to be heartbroken…not only for him, but for the rest of us as well.

And I’ll tell you why…

Because, as I told Pete in his post the other day, I’ve had my reservations about some aspects of his program…but I have been fascinated by all that he has been doing. And the thing is, that deep down inside me, as much as I questioned, I also hoped that it would work for Pete (it may still).

Because, Pete has taken things to the ‘extreme edge.’ And it takes someone like him or Lisa42, both of whom have the bravery, courage and fortitude to take bold steps into The Unknown.

And that’s a scary place to be…

Someone has to the initiative to take those first steps towards a future that is yet to be written. For this, there are to be applauded and admired for their resolve and their tenacity to go where some of us might not like to tread.

But, that’s probably because we’re mired in self-doubt and skepticism…it’s easier to shut the door than walk through it.

I’ve watched many other people with their various programs too…and I’ve often wondered about their decisions…not in a bad way….just wondering IF?

I remain glued to my seat as I watch and take notes out of all the stories that make up our corner of the globe.

The Unknown is such a dreadful place to be, because we have no reference from which to draw from, and so it becomes this scary place to contemplate and we usually don’t want to go there.

And because we’re scared, I believe that we let our prejudice come into play with these scary topics.

Yes, we’re all prejudiced on anything that is New and Unknown to us. It’s human nature’s way of shielding us against the fears that we harbor and are afraid to confront head on.

What’s always fascinating about prejudice is that when we drill down past our own trepidation, we usually find that it is not as scary a place as we originally thought.

I can’t speak for others, but for myself, if I’m really being honest with my feelings, watching Pete’s approach did scare me – and it takes a lot to scare me.

Now, I’m not exactly sure where the fear came from…I’m thinking that it boils down to seeing something working that had me questioning if I would have the strength and conviction to execute a plan like that – to any degree.

Or maybe it boiled down to the fact that the way I was pursuing was not cutting it – or never would cut it in the future. And to compound the situation, self-doubt settled in on whether I would have the discipline to attempt this kind of approach.

…and the thought of not being able to do something like this, would equate to a failure for me. And I so hate to fail…..though I am quite good at it:)

Money is an issue for me and I can’t engage a naturopath, TCM or a heavy supplemental program at this time. I can do and have done what I can afford to do, but to date on each occasion, I’ve netted a recurrence.

For me, I will be watching with interest everyone’s stories and their outcomes as well…at this point (7.6) years into my cancer ride…I currently credit WM for any successes that I’ve achieved…and particularly my surgical teams, who have extracted as much cancer as they could get to over the years.

I have had cancer 3x and have driven it back to a watch and wait state on all 3 occasions….that still stands as a pretty good record here on the board. For the most part, I’ve fought a conventional battle.

I also have to give myself a little credit for being able to have the mental fortitude and the physical ability to continually keep “having my teeth kicked in and my brains bashed out” from all of the years of treatments. It would have been easy to put a stamp on it and mail it in at a couple of different stops along the way.

I’ve reached the watch and status through the diligent efforts of many members of my medical team that I’ve employed along the way…I know that no matter which way that any of us select to fight this insidious disease….one point remains crystal clear and is indisputable…

SURGERY is the #1 bullet that we fire in the war against cancer….no protocol out there is completely successful without it.

While the jury is out on whether alternative or supplemental strategies ‘cure’ cancer or aid in its cause – well, many of you are writing your own chapters with that one – and I for one and am eager to keep reading and learning from you.

The same can be said for supplements boosting the immunity system so that it can help police the area as well. Can this be done? Or has chemo damaged our immune system to such a degree that it can never be fully operational? (such as my case, my immunity system is compromised from the chemical abuse).

Supplements biggest benefit appears to be making the person feel better – and that just by itself, is a good thing…as dear Lisa says, “Can’t hurt – might help.”

I like the idea of supplements with regards to offsetting or easing the side effects from our brutal treatments – there seem to be many good stories there…I dabbed in that while I was on Oxy and found “The Mags” which really helped my neuropath and cold sensations.

This post is running over and I need to go ahead and get out of your way – but before I go…

I wanted to take this opportunity to applaud and thank our community members here for sharing their lives and their strategies with us on this forum.

Realizing it is a conscious and voluntary choice that each of us make every time that we log here to come and be with one another.

Thank you!

You know, 40 years ago, the average life expectancy for someone with colorectal cancer was just 7-MONTHS…

Now, four decades later, our life expectancy has increased to 10-years and for some folks, even more. I believe I remember reading that this was a “17-fold increase.”

I know we hang on desperately for ‘the cure.’ But, from where I sit, the real strides that are being made with our cancer is LONGEVITY. We are extending our lives and so far, this is where the biggest victories are for us.

Of course, some of us are outliving the original prognosis we were given and are living or have lived past certain points where cancer normally takes our lives.

For those of that remain, there is long-term survivorship and the fallout from having to “Trade This for That” – you know, back in the day when we ‘had to.’

And while the doctors have increased the longevity in our lives, there is currently no treatment in a clinical trial or anywhere that helps us with the Quality of our Lives from the decisions that we made then – to be here today…

But, that’s another post on another day…

I appreciate the opportunity to be able to talk with each one of you today. I realize more than ever what a privilege it is to have this site available for our use and to have it for the times we need to have it. (Of course, the server was just down, LOL!)

I tried to talk with my wife about this and we’ll just say it was a very short conversation….with nobody else to talk to, I come to the only place that I have – so that I can speak to my friends about the things that are bothering me.

So, thank you all for continuing to put up with me and investing your time reading what’s on my mind at any given hour of the day:)

You’re the reason I stay here – you’re on the reasons I get up every morning – and you’re the reason I fight as hard as I’ve done.

For most people, this is your “2nd family” or your “cyber-family.” But as I’ve said before and it’s not a Texas line of b’$hit …..you are my family…and you are my friends…for any of those that will have anything to do with me that is:)

BTW, Big Billy said he will be stopping by on-line real soon…he wants to talk to you - as soon as you have had time to digest and recover from this post…LOL!

This was a very hard post to write – even for me…..took me ‘bout 9-hours to write.

May we all continue to learn from one another….as we drag the hard topics out of the shadows – and into the light…

I know many of the things I talk about have no relevance or meaning for many of the new folks and those in the early stages of their fight….but these are the way that I see things today – in this place – and at this time in my life.

I’m out here alone – and you’re the only life-line that I’ve got:)

“To beat thy enemy – one must understand thy enemy – and to understand thy enemy – gives us the best recipe for success…”

…and so it goes.

I’m currently walking along the the trail towards “The Path of Acceptance” - and about a good many things too.

Having cancer 3x can do that to a person. I’m beginning to understand that my path and the path that many others have walked before me, and will walk after us….is simply this…

Remission for a period of 5-years is our goal, but any kind of a cure is a moving target…and while I’m proud of my longevity, I still have not achieved that goal…and I’m beginning to see that I may never get there.

For me and perhaps for others in the fight….our road curves in a different direction – a path that leads us to Recurrence – Fight – Watch and Wait…until cancer one day catches us, or until our minds and bodies have taken all the beating that they can take – in anyone’s lifetime here on this earth.

You know, sometimes I need to talk to….and while I don’t expect anyone to agree with anything that I ever say or will say….I will say that I appreciate anyone who listens ...or has ever listened to me….in the end, this is all that I really ask out of my friends….and I try not to ask too much from you:)

With love and gratitude for each one of you out there…

Humbly yours,

-Craig
Stage IV – 7.6 years fighting – still kickin’ *** the Texas way.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Very thoughtful post. Thank you.
My husband likes to remind me that colorectal cancer is not like, say, diabetes. We didn't DO or NOT DO anything to bring it on.
Thanks Craig~

Kimo Sabe's picture
Kimo Sabe
Posts: 64
Joined: Aug 2011

Thanks for taking the time to write this. Cancer really twists the mind, and it helps to know you're not alone.

Norm

faith_2
Posts: 11
Joined: Jan 2011

Wow! You are an amazing person and gifted writer, Craig. Thank you for all you put into this site. I am a "lurker", not usually a poster. My 45-year-old son recently had a recurrence of his stage IV colon cancer (first diagnosed Dec 2010) and is in the middle of his second round of chemo. Your thoughtful, compassionate, and truthful posts help more people than you know.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

You are great!

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

Hi F2

I'm glad you stopped by...thank you so much for your kind words. Just wanted to pass along best wishes for your son....I was between 45 and 46 when recurrence found me...just had my 3rd one and currently doing ok - just turned 50.

Tell him to hang in there and I wish him the best in his fight. Thanks again for coming by...the very best to you and yours:)

-Craig

neons356
Posts: 58
Joined: Dec 2010

I believe there are some longer term survivors on this board. I'm NED for 18 years.

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

That is terrific news and I did not know that. That would you at the top of the survivor list alright.

When I was listing the long-term folks, I should have used "fighter" instead of survivor.

Because, what I was getting at is the folks that have actively battled their cancers and not been NED for any time or for any length of time.

We've recurred multiple times and still fighting and are at the top end of the fighting segment.

I will 'edit' that change in the post as I never want to misrepresent or hurt someone's feelings....

thanks for pointing out this fact....and congratulations on your success...that's a long time....a lifetime and a half in the cancer world.

Continued good luck to you, Carl....

yoga
Posts: 87
Joined: Feb 2011

Craig,

Wow! I read your post twice . . . . you have such an incredible way with words. I am sitting here with tears in my eyes thinking of you and the others who are looking at the possibility of recurrence - how amazing all of you are to me.

My story is a little different in that I was diagnosed in July of 2010 and have been on almost continual chemo since that time with no surgery because my liver had about 20 tumours - no idea what the count is at the moment, and I really don't want to know. Tomorrow will mark the start of chemo #34 for me. My last scan, in late November showed that FOLFIRI was no longer working and that things were once again growing in my liver. I then switched to FOLFOX; my treatment last week was cancelled because they felt that my hands were far to blistered for another round of 5FU . . . . . hopefully tomorrow I will get the go-ahead. Wednesday I get another CT scan with results on Friday. I have been worried about the scan for weeks now - something just doesn't 'feel' right in there - but I hope I am wrong. Surgery is a very distant hope for me - but one that I will not give up on. I hope that my oncologist doesn't give up on me yet.

I have digressed somewhat in my original intent here . . . . . you. I truely have the greatest respect for you and your ability to put your thoughts and feelings into your posts.

Know that you and all of the others on the site are often in my thoughts and prayers. I am so often moved to tears when I read of the struggles and suffering that so many go through to continue hanging onto this precious life that we have been blessed with.

Warm cyber hugs to you from Ottawa . . . . . if I ever get to Texas (and it is on my 'to do' list!) I hope that I will be able to meet you and have a long talk about your journey.

yoga jo

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

Your post touched me and I just wanted to say thank you so much for your your kind sentiments. I'm truly honored. I've followed your story and I know the road is difficult...sometimes we don't even want to look too far on the distance...sometimes, it's just too much to bear - and too painful to contemplate.

34 is alot of chemo...I've done 51 of 'em and currently on hold...but it's been hard on me and really took a lot out of me this last time. Too much more of that and my renal system is going to fail. Sad what we have to go through.

I am hopeful that something will work for you - and would love to see you become a surgical candidate - that's the prize that we all want and understand it is the biggest thing we can do to increase our odds and more importantly, our longevity here. We will both onto this hope that you will get there.

Your confidence and support in me is overwhelming and it fills my heart to the brim reading what you had to say...it gives me this belief that my book project is of a noble and worthy venture - and that if I can reach folks like you, perhaps I could more folks, if I can get this thing published.

BTW, stay tuned....there is a promising development in the works that I hope will come to frution...

And if you ever find yourself Texas bound...we will meet and talk as long as you want to:)

I'm a pretty good listener as well as a long winded sob:) LOL!

-Craig

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

A wonderful sincere and thought provoking post, as always (with a few tears thrown in...). Thanks Craig - and continue to kick butt for another 7.6+ years, ok? :-)

Love ya,
Cyn

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

You are a gifted writer, Craig! Thank you for the time you take to profoundly express about this horrible disease so many are fighting. As a caregiver, I am moved to tears and it truly helps me understand what my husband may be thinking but won't say. God bless all of you who are fighting cancer!!

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

You said it all and are a great inspiration to me. Agree with you on Petes situation.
Cancer is such a beast no matter what you do IT does what it wants and makes the rules.

So glad you are a part of this community & thanks for all your input. Im a pretty much a cancer newbie (2nd yr but with a recurance to lungs) dont post a whole lot but read regularly.
Looking to the day (God willing) I can say 5yrs NED.

Saludos, (fellow Texan)

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

Hey Buddy

Thanks alot, man...makes me feel good that you feel this way...I'm glad you're here as well. Following your story with keen interest...thanks for your continued support!

-Craig

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

You are more than welcome! And thank you too for your kind words...I'm glad to be able to give you some insight into the workings of the male brain...

And we certainly appreciate our caregivers too:)

-Craig

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

There's certainly not a lot of definites in this world of cancer. It can truly be vexing. Good luck to you as you walk down that trail towards "The Path of Acceptance". I am sure there is some peace to be found.
Karen

- o.k. now, Who's Big Billy? I must have missed something somewhere. I don't think I've met him. lol???

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

"He's the muscle - behind my hustle."

LOL!

He's my alter ego in the cancer world and represents the "fighting side of me."

I'll have him stop out soon - he wants a chance to talk and I told him he could update on the saga I've had with this publishing thing...

You'll dig him! I'll update my avatar with his new pic too - he is serious and scary looking dude, but if you look close, you'll see me through him. He's gentle and warm, but he's a cancer kickin' SOB too:)

-Craig

wolfen's picture
wolfen
Posts: 1326
Joined: Apr 2009

What a thoughtful and thought provoking post! Recurrence has definitely become a "dirty" word around here lately. I check the board and wait patiently for reports from so many of my friends for updates concerning it. Seeing so many at this time makes me picture Cancer as a bull that you think you have finally gotten by the horns, and then it turns around and gores you. My Johnnybegood called after her onc appointment today. According to her Friday scan, the chemo is shrinking the lung tumors, but the one new liver tumor has more than tripled in size, so go figure. It's as you said, it can come back anytime,anywhere.

I praise her, you and everyone else here who refuses to give up the fight and hope very soon that recurrence is erased from the vocabulary of every cancer patient.

Luv,

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear craig and all,

amazing , wow, thanks. i sincerely appreciate your reflections and the time and effort to put them down.

see the post mind games 101

Reading your post over and over has given me clarity and peace.
our forums rules like just telling "our experience" and not preaching, i try to follow.
what we share is food for thought.

i firmly believe the key to my survival and quality and enjoyment of life for me is knowledge. we raise the bar of patient knowledge here, we then can demand the best treatments. i have a treatment plan from germany that seems much better to me.

i have learned so much here, from so many, factually and emotionally.

i felt my sharing would at least show one way, to build our communities collective knowledge and value.

Harmony over ego i think should always be our rule.

my obsession started the night i was diagnosed.

i use the word obsession carefully, as i have friends mother inlaw with pancreatic cancer asking me for suggestions.

i know how expensive my regime is in terms of resources, money, time, support, opportunity cost. I sms'd my integrative gp's number and said if her sons will not come to the initial consult then almost don't bother. as the pressure of being given a regime ( with no guarantee ) and then no capability to follow it is cruel. so i would not even bother.

don't waste a precious day, i say to myself.

thanks again craig, i have put a link to this post from my blog as you know i tried, or as some here know "am trying" . in many senses of the word.

hugs,
pete

ps i have issues with markers, goals, 5 year targets. the best target for me is if today is my last day, have i lived it well. the answer is mostly yes.
so i do my best and have no time for regrets.

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

As always...it's never about the message itself - rather it is the 'tone' with which it is delivered:)

-Craig

lauragb
Posts: 370
Joined: Aug 2011

Craig,
Thanks so much for this post. So thoughtful and well-written. I am in my first year so still relatively new to this. I have learned so much on here and have also learned from my experiences from treatment so far what a continual experiment this all is with no definitive outcomes.

To staying in the light,
Laura

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Thanks for writing this Craig. Recurrence and remission is a fact that hangs out in my neighborhood too.

I agree with: "I’m currently walking along the the trail towards “The Path of Acceptance” - and about a good many things too."

Here's a favorite reading of mine while navigating the stormy cancer waters:

Michael Lerner
Choices in Healing:
Integrating the Best of Conventional and Complementary Approaches to Cancer
1994 MIT Press

“I would pay a great deal of attention to the inner healing process that I hoped a cancer diagnosis would trigger in me. I would give careful thought to the meaning of my life, what I had let go of and what I wanted to keep.

“I would give careful thought to choosing a mainstream oncologist. I wouldn’t need someone with wonderful empathetic skills because I have other people to provide that. But I would want a doctor who is basically kind, is on top of the medical literature regarding my disease, takes the time to be deeply involved in treatment decisions, supports my use of complementary therapies, and sticks with me medically and emotionally if I were facing death.

“I would use conventional therapies that offered a real chance for recovery, but I would probably not use experimental therapies or therapies with a low probability of success that were highly toxic or compromised my capacity to live and dies as I choose.

“I would use complementary therapies. I would look for a good support group and a psychotherapist experienced in working with people with cancer. I’ve been a vegetarian for many years but I would look for ways to enhance my nutrition. I would meditate and practice yoga more often, and spend more time in nature, taking walks in the woods, by the ocean, and in the mountains.

“I would definitely use traditional Chinese medicine, both herbs and acupuncture.
I would strive for life and recovery with every possible tool and resource I could find. But I would also work to face death in a way that deepened my growth and led to some resolution.

“I would spend time with people I value, and with books, writing, music, and God. I would do everything I could do that I didn’t want to leave undone. I would not waste time with old obligations, though I would try to extricate myself from them decently.

“I would try to live my own life in my own way. I would try to accept the pain and sorrow inherent in my situation, but I would searchingly for beauty, wisdom, and the joy.”

all the best, Leslie

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

You know what I was just thinking of?

I was thinking how we had just taken a seat on the park bench right outside of the Navy Pier....and we were just getting comfortable after that long walk....we were just about to get into a nice conversation......and then we had to catch up to the group...

I wish you and I had more time to have those impromptu chats - I really enjoyed talking with you during the time that we did have though:)

You're a great friend to me - you see things in me that I can't see - and have such a belief in me that I want to believe in - and sometimes I can, but sometimes I need help:)

Thank you for all of that and more.

We'll always have Chicago, eh?

-Craig

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Yes, we will always have Chicago my brave lion (borrowed that phrase from someone I admire :)

Ride on
Leslie

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

That is beautiful Leslie---wow. Am saving it.
thanks!

Wenchie
Posts: 88
Joined: Apr 2009

All I can say is thank you, thank you, thank you for expressing all that I'm feeling.

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

For all of your kind responses...:)

-Craig

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Thank you. Extremely well written. All along my thoughts were we will do the best we can to fight this monster, no matter what road we choose to do so, with no looking back and no regrets in our decision. Of couse I say we because George and I are in this fight together, always have been and always will be. We try and make the very best decisions we can regarding treatment options, weighing all info available. No one is right and no one is wrong in this regard, just doing the best we can.

Just when you begin to think oh so and so has got it beaten, bam, they report rising CEA's and indicators that the cancer may be back. Just heartbreaking.

Best wishes - hugs

Tina

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

As always, you touch my heart. I'm praying for 25 years and more for you, my friend. I like having you around.

I'm thinking hard about my lack of discipline as far as exercise goes. I believe firmly that it is one of the keys to prevention and to prevention of recurrence. I need to get serious!

*hugs*
Gail

Livingbyfaith's picture
Livingbyfaith
Posts: 56
Joined: Sep 2007

I have been trying to figure out what the heck is going on. My husband had surgery, stage III in 07, reoccurence large liver tumor 2011, started chemo, tumor shrinking. Last ct large tumor shrinking but now two small ones in liver slight growth and in lungs slight growth. These seem to be growing in spite of chemo. Now changing to Oxi, xeloda and vecibix. He looks great, does supplements with oncologist approval, works, exercises. His mother had breast cancer, one nurse said just in genes. What now. He was on Avemar for 4 years before reoccurence, started back on it. Nothing said of Sir Spheres yet, trying to do first line treatment I guess first which is chemo. He has been eating a lot of sweets to maintain weight, now trying to cut those out. We need wisdom from God, oncologists are so busy its almost like assembly line treatment. Any advice would be appreciated.

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

The only advice I have for myself or for anyone...is to just keep trying.

Once the cancer goes systemic, it's like swinging the barn door open and letting the horses and cattle scatter....that's why recurrence is so tough....the body is a huge maze and it becomes much harder to eradicate a moving target.

Despite various approaches, we still see recurrence over and over....I'm of the thought now (after 3 myself) that once we recur....we're more prone to recur....and we recur in a much shorter time frame.

If we took 100 of us...and all of us got the EXACT same drugs....and ate the EXACT same things....and did the EXACT same exercise program....etc.etc.....there will be those that do good, while others did not.....some of us would make it....while others of us would not.

And of course, there is that very old and tired line that we throw around up everyday..."We all react differently."

And, of course, there is a lot of truth in that....and that's why there is no panacea to cancer...and why there will never be a complete absolute answer that "If we do this - then we achieve that".....and then 'that will be that.'

I've tried several different ways...and got clear all times....but recurred each time...and waiting to see how this last time goes...I don't think for me that it's IF anymore, but rather WHEN.

I've had it off and on for so long now. Just keep trying and fighting as long as you can...I think that's all that any of us can really do.

-c

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Thank you, Craig. Great pearls of wisdom.

I have to say that I have found peace with my prognosis.
I have had a good life with many blessings and you know that is what the circle of life is all about. I find great comfort in what you have written. It lets me know others are there feeling the same thoughts.

Pete is so right - don't waste a precious day, i say to myself.

As Steve Jobs said Death is a Destination we all share.

There is peace in understanding and accepting.

Hugs,

Lizzy

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

I'm so proud of you and how you are looking at things - I hope to one day be able to carry myself in the same manner. I am glad that anything that I can say has helped you...to see you comforted, does a great deal in comforting me too.

Continuing to stand by you...

-Craig

crazylady
Posts: 544
Joined: Jun 2004

Hi Craig,

In March it will be 8 years since I was diagnosed with rectal cancer. I don't even call it a recurrence anymore. It has been so long since I was clear that I always have cancer. It's now a matter of how much growth occurs or maybe there's stability for a while if I'm lucky. My scans in early November showed considerable growth. I have run out of chemo options and carry the Kras mutation. I was tested for different tumor markers for some drug trials and have none of them. I have been off of chemo since the end of October which really scares me. I had scans last week and on Tuesday I will start chemo and revisit some old drugs hoping that they can keep things stable until something new comes along. I know I'm lucky to be alive, but I'm not ready to give up yet. I can't really say why I'm still here when many people aren't. I'd like to believe it's because I've always been very aggressive about treatment, I'm very stubborn and I always seem to have hope. Honestly though it's probably just dumb luck. Either way I'll take it.

I hope that you achieve all of your goals!

Jamie

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

...and you too:)

I turn 8 in June 2012.

It may be luck...but I can tell you that stubborness and orneriness does carry you a long way....sounds like we both drank from the same fountain.

Wishing you the best...and thank you for your post.

-Craig

janderson1964
Posts: 2215
Joined: Oct 2011

Craig how long ago did you have your most recent recurrence. I am a 6.25 year stave IV survivor. I just had my second recurrence. Had my right lobe a part of my diaphram removed along with a tumor on my abdominal wall. I had a portacath put in on Friday after 4 years of remission. I feel like someone on parole who just violated his parole and is being thrown back in prison. I start treatment tomorrow. They cut all of the visible cancer out but I am hoping that "mop up" will work this time. I am also one of those survivors who is harcore into the mostly vegatarian, organic diet and an avid mountain biker. This most recent recurrence definately has me questioning everything that I do and have done. So many things that you said in your post REALLY hit home with me that is why I ask how long ago you had your most recent recurrence.

Thank you for sharing so much of your thoughts with us.

Jeff

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

It was confirmed in the O/R last year July 2010...tumor was about the size of a tangerine and had embedded itself in my rib cage and was very close to the spine...surgery got most of it, but we did not achieve clear margins...and so we had to do 30x IMRT radiation w/5fu pump 24/7...and when that wrapped, we went back to Folfiri (I had 2 rounds prior to radiation starting) and did that for 5 more months.

I got back to a watch and wait state for the 3rd time...scan cycle #3 coming up on the 30th and I'm hopeful that all will be well for now.

I know what you mean, Jeff....once you experience recurrence, it really messes with your head...and as you say, has you rethinking "everything." You begin to see things "a certain way" since you've been 'in the bush' so long. I think one begins to understand things as they progress to the next level of their physical fight as well as their understanding of the disease itself.

From where I'm at on my 3rd time, I'm just starting to believe that once we recur, that starts some kind of a chain reaction. I'm wary of #4 and not naive enough anymore to think that at some point, it won't find me - not IF but WHEN.

When I met you and saw you had gone 4 years and then recurred, it spoke to me in volumes...I think it spoke to you as well. I think that what you and I see is that despite various ways to battle the disease, it always seems to stay one step ahead of most of us.

It makes me feel good to know that my post has resonated with you...especially for another long termer:) This lets me know that I'm on the right path and I thank you!

-Craig

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks for the reply Craig. I used to believe that I was cured each time. I still think cure is possible after each surgery. But like you said I am not naive. I do know that the likelyhood of recurrence is very high, but there are new drugs on the fast track for approval, hopefully this year which are good options for us if we need them down the road. I hate this disease and will NOT give in to it. It is a challenge to me to fight it everyway I can. Everyday I wake up is another small victory.

I like you truly love this forum and all of the people on it. You are all heros to me. Only stage IV cancer survivors can truly understand what we are going through. Hearing the words recurrence is definately harder than hearing the words you have cancer for the first time. You would think it would get easier each time but it gets harder.

Cancer can be a very lonely disease. Evan though I have a loving wife and am surrounded by many people who support me any way they can I still feel isolated at times. Here I feel at home. We all experience many of the same emotions to one degree or another.

elizabethgd
Posts: 146
Joined: May 2009

have recently been reading the posts here.. many of us face recurrence. the recurrence talked about with such insight brings us back here.... like going home.. looking for the comfort that comes from others knowing what we are being dealt.. strangers who have first hand experience with our inner thoughts feelings fears and ..the big disappointment--even though we always try to prepare ourselves.. we are never ready for the recurrence. It is comforting somehow to know there are others who know what we are going through.At the same time we wish that no one ever had to know. Sending good wishes to all of us..one day at a time..

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I'm reading this a little late Craig....you are NOT alone buddy...the life line ties us together! you brought up many things I think about!

Love, gail

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