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Unplanned Scan + Set My New 'Clear' Record

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

There has been quite a lot of sad news recently. Tragedy seems to come in waves in this part of the world – during my time here, I’ve seen over 250+ fellow fighters fall by the wayside as the war on cancer continues to mount.

Many of these folks were dear friends of mine…

The impact of losing the friends I’ve shared with over the years here has started to have a profound impact on me…it’s very cumulative and it continues to add up.

Part of me wants to run, and yet, I find that I cannot, even in the wake of things still to come…we must take the bad with the good and though it pains my heart, I feel that I must stand by the few remaining friends that I have left here – to be there for them.

There is another part of me that says I’ve had enough of this pain of watching & witnessing what cancer has done to my friends. I’ve always tried to see the other side of cancer and the good things that we can bring out of the chaos…

But, when folks start fallin’…well, I just can’t gloss it over at times like these….

The community now is full of new members who are going through cancer and some are going through it for the first time. You’re meeting new members and getting bonded and feeling connected. You’re identifying with other members who had a similar case of cancer as you have.

Or, you’ve identified with the first people who welcomed you to the board. You’re getting great advice and you’re fighting your fight…

And then the losses start…and then they continue…and they never seem to stop…and new folks come over the hill starting the cycle anew.

At first, you take the hits and absorb the losses and continue to post and move forward and we’re gonna’ “kick cancer’s butt”…and all of that.

What’s gonna’ happen – if it hasn’t already, is that there will be a passing that will carry more personal significance based on the relationship you had with them. That’s gonna’ hurt – and hurt bad. You can imagine stringing together a few hundred of those…in just 3-years time.

As I said, I’ve watched hundreds fall as I helplessly watched the tragedy unfold…it can get to a point where it feels like too much. I’m as strong as I can be, but it does get to me.

I guess for me, it comes from being a product of the Class of 2009…it was a magical time here filled with very special people…or maybe it just seemed magical, because as much as I thought I knew, I was naïve to the cancer world around me – and what it was capable of doing – I had not yet seen the true dark side of cancer. I was just so happy to be here and wanted to help folks with the things I’d already gone through.

When I said goodbye to my first oncologist on our last visit, he told me, “There is a calm over you now that I have not seen in our previous 5-years together.”

I told him I had found the board…and we were just one big happy family…a family that had cancer, but other than that, it was just too cool.

He looked at me straight-faced and told me, “You know some of them are not going to make it.”

I looked at him like a deer caught in the headlights – just dumbfounded was I. I kept thinking you just don’t know our folks…we have cancer, but we’re gonna’ live forever.

That’s how I wanted it to be…

Sadly, my time on this board has shown me more enlightenment and realism than even I want to look at sometimes. It is getting harder and harder for me to see my ’09 Classmates leaving me behind.

It’s such a hollow feeling – and it’s nothing against the new folks…I’d like to get to know you. I’ve not been able to connect with many of the new folks that have joined, though I’ve tried to touch as many as I can. My life is under construction mopping up my dad’s spills and handling a very demanding workload.

But, with so many of my friends gone from cancer and the others away from here and out living their lives, you look around the room and you feel like such a stranger in the house that you have lived in. It’s hard to explain.

The list of folks is so long…and so painful…a lot of times I deal with death – by not dealing with it. But the board has made me address this time and time again…often with very profound feelings from the passing of people who had come to mean so much to me.

I always thought it would be forever – I think I’m still naïve like that, otherwise, I’d just lose my mind here.

While there is still time for all of us, I just wanted to take this opportunity to thank everyone here I’ve ever met and talked to – you have meant so much to me…and I guess this has been reinforced by the pain that I feel for your passing or your imminent departure…that tells me that you meant something to me.

Thank you for that! Thank you for all that you were to me – and to us!

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

The past few weeks, I’ve been having terrible shoulder pain – that would radiate down to the elbow – and down to my right thumb. Sometimes, it feels like my elbow is numb, but my thumb tingles that neuropathy type of tingling, you know?

The pain got so bad, I had to resort to taking Tramadol for a few days. I can’t stand medicine and I hate taking any type of medication – so for me to do this, was a big deal.

This coincided with Steved’s news of his upcoming surgery along with Jenny’s recent passing…

Steve’s case has been working on me for some time now…I’m not going to lie…I’m just flat out worried and concerned for our friend.

What got to me was that where I was hurting in my shoulder was where they sawed off a couple of my ribs, which was in the area where I last had confirmed cancer. They had scraped the chest cavity as clean as they could get it, but could not get clear margins, so we had to radiate.

The ribs/bones at that time biopsied negative, but cancer was visibly present in the chest cavity…so my mind went to bad places real quick….I had this nightmare of them amputating my right arm up to the shoulder.

As I said, Steve’s case has messed me up…I’m just not as brave as he is.

So, I had a knee-jerk reaction and made an appointment with the onc to go over my concerns. And he took me seriously. He did not think it could be cancer, but felt that my complaint was valid.

So, he ordered a PET/CT scan for me…..just three-months past my last clear scan…I wasn’t scheduled for anything until after Turkey Day…

Who would want to overlook this and take the chance on a potential tumor growing to a point where we had another problem to deal with?

Knee-jerk reaction, sure?

But, better to be safe than sorry.

I am very adept at interpreting CT reports and requested mine be released, so that I could evaluate my condition.

When I got through reading the report…I liked everything that I saw….Still Clear!

We’re now at 15-months, which is a new personal record for me! This breaks the 1-year mark that I held the longest in my very 1st year…

Now, in Year 8, I’ve scored the biggest victory against cancer in my entire battle….and it’s come at the end of many years of fighting – at a stage where many are no longer able to fight or have already transitioned out.

Even I get cynical and jaded at various times….but Hope does exist…it can happen…

HOPE is still alive…

With all of the sad news, I hesitated in writing this post. Mostly, if the community news is good and mine is bad…I wait.

And if the community news is bad…and mine is good…I wait.

But, I see spirits sagging out there and know everyone’s resolve is again being tested and perhaps starting to wane…so I wanted to offer up this latest news of Hope.

Victories of this magnitude are hard to come by, especially after so many years. One expects to be losing the fight, instead of winning the big one – we understand that there is no guarantee…but cancer is not claiming all of us, though he takes his fair share.

I’m 8.3 years into the battle…15 months out of my last fight…and just scored the biggest victory of my fight (so far).

I thought this news might help a few out there…

I wasn't going to post about it, but since we just did this scan, my onc has cancelled the Turkey Day scan, which will push me out to Feb2013 for the next scheduled scan. So, that combined with all of the sad news made me decide to talk with you today.

So, for the first time in my entire cancer journey…I’m now walking down the Path of the Unknown. I’m not sure what to expect going forward. I’ve outlived many other prognostications on my imminent demise during my cancer battle, but I wake up each day and find I'm still here - The Whys I've stopped wondering about.

'Cause, I just don't know...

Still too early to get excited…but I thought the news had some relevance to it and was worth posting the news to the group.

I’ll close with this very sobering thought…

One would have to walk the long cancer walk of close to a decade, to understand the conflict I feel from living all of these years longer than I should have – while the friends that I grew up with are falling all around me.

As time goes by…you become a little bit lonelier up here at the place you considered a haven - and called home.

Because, you see, there is a little piece of you that dies along with the person that just passed each time that they do – and it wears you down much like the waves that smash against the rocks on the shoreline...

I haven’t lived to a ripe old age, but I imagine this must be akin to growing older by nature and having your friend pass…and you wake up and find you are one of the Last of the Mohicans. It is some kind of funny feeling.

I think I finally understand now what it is that Emily was trying to tell me about losing people close to you…

It's taken me three very hard years up here of "Emotional Investment" with all of you to gain that critical understanding and come to that acceptance.

Still I won’t give up on myself – and I’m certainly not giving up on you.

I’m stupid like that.

Much love and healing for the community!

Love/Craig (8.3 yrs)

jen2012
Posts: 1207
Joined: Aug 2012

I needed to read this. In the hospital with my husband after having his paraaortic biopsy....Dr said prelim results look cancerous so stage 4. I hate this. This really sucks. Been looking for bits of hope and found lots here...only to realize they were old posts from people no longer posting. Its been depressing.

I'm really happy you got good results and hope it continues.

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

Nice to meetcha:)

It's hard to say who will make it - and for how long. There have been quite a few who have it several years out...most of the folks come here - get what they need - and as soon as they are clear...it's adios, amigo, until....

It comes back...and then they come back.

This paints a skewed portrait of how many folks have shown positive response and gotten ahead of cancer.

But, the truth is that many of us do not make it...as I indicated I've seen hundreds here come and go...and many more leave when things got good for them...

It's important that a few remain to help the new folks and to provide an example of the good things that can be done against cancer.

That was my mission when I came here...I was 5-years in and had alot of experience with the stuff that was going on...so I did not come here as a patient...I came here to mentor and provide my experience so that others might benefit from hearing it.

It's getting harder and harder to stick around...but I'm going to try.

So, don't lose Hope...there are many members here who are doing quite well...

Take care and the very best with your fight...I've read a couple of your posts:)

-Craig

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

You are "spot on" with all you said. Sometimes it is very difficult to come here knowing that another soldier has finished or is nearing the end of the battle. In addition to the sadness of losing another friend, it hits too close to home for me, as you know. By rights, maybe I shouldn't be here...........

But then I think "Maybe I can offer just a word of hope or encouragement to someone, or maybe a little comfort or laughter". So I logon and read on. You, my friend, are amazing in that department. You have made such a favorable impact on so many.

I'm so glad that you have reached another milestone. And I won't give up on anyone either. Someday, someway there has to be an end to this beast.

Luv,

"Mama" Wolfen

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

Don't you even think about heading for the door!

Who's gonna' read my posts?

LOL:)

You, Cynthia, and Marie...I've got to hold onto my core audience:)

You have every right to be here...I've said it before, but hear me roar a little louder this time.

I don't want to lose any more of us...no matter what. We're only as strong as our membership:)

And I know "things" have got you thinkin' - me too. And I hope that I never have to read a post like that from yours. That would be very hard.

I so appreciate having you in my life:)

Love/Craig

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

Don't you go anywhere my friend! The folks out here need you, especially the newbies. You are the beacon of light that shines through those dark and stormy clouds. I don't think that I could have made it to this point, and still be somewhat sane, without your words of hope and inspiration. For that I am eternally grateful.

Love ya buddy,
Cyn

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

I cannot tell you how conflicted I was about posting this. You were the driving factor behind me not wanting to post anything. Normally, I might have let this one go by.

All of the heartbreak is rocking the community...I just happened to have this done and got the result, and just thought it might help to know that every situation is not automatic.

Yours and Rick's friendship has been very meaningful to me. Because, we've shared so deeply, I am hurting deeply.

I am glad to be part of you that warrants such trust in me.

I wish I could take away everyone's pain...

I feel like a jerk for posting good news after you posted Rick's...thank you for understanding...I did it for the group and not myself.

Everyone still needs to see a light at the end of the tunnel...

Love/Craig

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

Not only is good news always welcomed it is vital to have.

Who of us could come here, even for advice, if there was never any good news to be reported.

While the "ultimate good news" of a cure aludes us, each small victory brings hope.

I missed being in the'09 class by days because it took me that long to find this site. I too remember how it was then. The biggest change since then is that there are so many new folks joining the ranks. Don't get me wrong, I am glad that each person has found this site for the information and support it can give. I guess before it just seemed like there were fewer folks who were being diagnosed. Looking back that is a foolish thought. So many just didn't know to come here.

So for you and everyone, please continue to report the small and large victories so that hope remains a part of this site.

Hugs and love,

Marie who loves kitties

P.S So very very glad for your good news!

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

Don't feel too bad - it only took me 5-years to stumble onto this place:)

The first 5-years I walked alone by myself, while Kim worked late night shifts...I had lots of time to ponder...

We represent only a microsom of the colorectal cancer population here on the board.

Most of our friends either pass away - or they leave the board after they get clear. Some of us stay here through thick and think to help and support, but we are the anomalies.

News like we've received always gets one thinking - and re-evaluating things...

I know my time might be tenuous, but for now, this is the biggest thing I've achieved...now, we'll see how far I can get with it.

I can always count on you - in a world of everlasting change, you remain one of the constants - a stalwart in the face of the storm.

Love/Craig

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I have to admit that I am feeling a little hopeless as we continue to lose friend after friend lately. It makes me think that those first docs were telling us the truth and it really is just a matter of time. I have slipped into a depression and I'm afraid it's one of the deepest so far. I am living scared and mourning my husband that in reality is doing wonderfully physically and by my side. I say physically because I don't know that we are ever okay emotionally after such an attack on our lives. We are trying to live but we just really don't know how to live this new "cancer life". I have had many people tell me that I am so strong and that they are in awe of how I handle it all. Here's the thing... I DON'T SEE IT. I dont feel strong and I don't want to have to fight anymore. I don't want to wake up to having it all rush back at me every morning. I found myself driving last night, I couldn't even drive the speed limit because I just couldn't react to everything at the speed it seems life is going. I pulled in garage and sat there with tears streaming down my face. I didn't want to get out, I didn't want to come back to cancer reality. I was at the point that I just couldn't function anymore. I was emotionally exhausted and just didn't want to have to see or talk to anyone. I drug myself out of my car and into the house. My husband saw the condition I was in and knew that what I really needed was some time. I rolled up in a fuzzy blanket on the couch and just layed there until I fell asleep. I can sleep twelve hours and wake up tired (sound like a flag? I know...) So, that was my pityfull evening, one of the most pityful I have had. I feel GOD carrying me and I don't know why he keeps coming to rescue me but he does, he never hasn't.
Maybe I don't belong posting this here but you are the people I know and sometimes it's you that I need to talk to. So, I feel a little better this morning, I don't want to fight anymore but I will.
Thank you LORD for not forsaking me. :) GOD's blessings to you all.
Brenda

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

You see, Brenda, I'm sensing that you are feeling better having voiced your feelings here in this post. If we can't express ourselves here, I'm not sure who else would listen to us. And certainly their lack of depth in understanding would be evident.

It is difficult to live with many aspects of cancer - whether in treatment or in a remissive state. It is easy to fall into a depressive state anywhere along the paths that we walk. Most people figure if you get clear, then it's all downhill from there.

I've tried using my story to illustrate that getting clear is wonderful, but the trauma and damage that can occur, can have lasting impressions. It's not always "Living Life to the Fullest - Each and Every Day."

That's just what they print on the brochures...a very slick marketing gimmick. But the truth, the reality is much different. I suspect many of us (including myself) have been reticent at times for wanting to post this topic and talk about it, because we feel that it would be a disservice to the community.

But, maybe we should talk about it more...I know it's there for many of us...I see it lurking just under the surface. I've never broached the topic, but may in the future. I've got a couple of good topics I wanted to talk about at some point.

It seems to me that t he trick is to figure out how to put our lives back on track to a degree that we can function and live a little when we get to clear points. Wondering how long those periods last for those of us fortunate to achieve them, is an anchor that is hard to cast off from. It keeps us tied to the docks alot of times.

I've seen alot of bad spells in my time here, and this one certainly has its place in the annuls of the board's history.

BTW, thank you so much for your comment on YT for the video:)

I'm sorry you had a bad night the other day...they happen. It just builds up and becomes too real. Hearing you talk about "not wanting to face cancer" by going through that door, resurrected the thoughts I was having about my wife as we wrapped up last year's fight.

She told me she was "Emotionally Bankrupt."

When I hear you talking about this, it echoes the thoughts and feelings she must have had.

This is the real stuff that we need to be talking about here.

X's and O's will always change, but the human condition never will...and it's the emotional aspects of the disease that has always fascinated me and where I try and do my work.

If you recall in the video, when I started talking about Chicky, I lost it for a moment and started welling up, and nearly broke down.

Now, most people when they cry, they say one of two things:

1. I promised myself I wasn't going to cry.

2. I'm sorry.

If you noticed, I never "Apologized" for crying. And that's because, I'll never apologize for being human - or feeling human.

You saw it...I regained my composure and got back after it. But, I'll never apologize...and neither should you - or anyone else here.

Thank you for posting!

-Craig
"The Feelings Guy"

Cathleen Mary
Posts: 572
Joined: May 2011

Craig,

Thank you!!! I needed your post, both parts, today. Thank you!

Hugs,
Cathleen Mary

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

I'm glad I can still contribute:)

You are most Welcome, Cathleen!

Texas Hugs!

-Craig

janie1
Posts: 753
Joined: Apr 2011

Hey "Feelings Guy".

I am elated that there is some good news. Brenda pretty much expressed how I feel, too. My level of functioning has tanked. I'm crying right now. I know the "stress" is bad. I'm overwhelmed, depressed, just fed-up with everybody. Dealing with doctors front office folks is as bad as cancer. I just can't take the attitudes anymore.

I'm seriously considering seeing an alternative doctor who many people try to de-rail, but clearly, what I am doing isn't doing much. The liver surgery just spread things. I'm mad that I didn't know about cimetidine, and really mad that the top-doggie surgeon didn't recommend it, cause it is clearly written in papers since about 1985. I'm mad that the surgeon is so arrogant that he couldn't even tell me that there weren't clear margins with my liver resection. He had a zillion opportunities, but he just gave his coy little smile. It's an insult. Does he think that I can't read....or did he think that he could get away with it. My trust in the surgeon and onc has tanked also. Not a good feeling. Who's gonna flush my port? Who's gonna write the orders?

HA - didn't mean to lose it here, but I can't stop crying. It's been building up like a poisonous gas. Feel so bad for everyone, but like you said, there are many survivors who have moved on. So, I know that many people have survived this and it is good to hear the good stories too.

Give Harley a big hug. My husband is out of town until late tomorrow, so I am having a big-time pity party with me, myself, and I. Who said 3's a crowd?
-j-

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

Don't mess with J:)

I can hear your frustration and I truly understand it. Alot of my early frustrations the first five-years centered on the lack of information about everything from surgeries to treatments to the permanent side-effects.

It's the reason that I continue to stay here, in the event that I can spare somebody else from being practiced on and learning the results "after the fact" like what happened to me.

I'm glad you could unload some of this in this post. Build-up does lead to shutdown, no doubt about it...I'm glad this post could act as a relief valve to get some of that out.

Pity parties are okay...I've had a few in my day...I always invite Me, Myself and I:)
At least we're not by ourselves:)

LOL!

Even to the parking lot:)

You are cordially invited - meet me in the corner of the Walmart parking lot - you bring the tacos:)

LOL!

Seriously, J, I'm sorry things are difficult...last year I was about done...just about the time I met you...and things were going south in a hurry. I'm still recovering but doing pretty good for all the things they have done to me.

I wish the same for you. If I can ever be of any help, you know where to find me.

Thanks for posting and thanks for listening!

-Craig

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I don't know that I will ever look at the Walmart parking lot with out wondering if there is someone out there hurting or in a fog. That is where I spent some time last night, just sitting with my engine running and not answering my phone. I was probably worthy of a bright unit stay but I made it to today and marched on.

Janie, I am sorry that you are going through all that you are and I am really sorry that your husband is gone at this time. I think some of the hardest times are when we are alone; maybe because we are busy looking strong and being the positive one until we realize there isn't anyone around to see us have a weak moment... we allow ourselves to feel the anger and self pity because some times we need to blow off that poisonous gas that you spoke of. I was blubbering again today, I just feel better afterwards.
Thank GOD that we have folks here like Craig to lends us his understanding.
I think I am going to write a letter to Walmart and let them know sometimes their parking lots are moonlighting as a place to have our little parties. Maybe they will serve refreshments next time they see one of us out there "partying". lol
GOd bless you.
Brenda

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

And I thought I was the only one who had done that.

That's an inside joke between me and Janie. That's how we met...I opened a post about loneliness and I revealed that I had driven to the Walmart parking lot, just so I could feel that I was part of the living and to get hope that I would again rejoin society.

Janie emailed and we talked about - friends ever since...

I had gotten so lonely and isolated and I began talking to the wallpaper...even scarier, the wallpaper began to talk back.

I knew I was in trouble...

Cancer tries to take away all that there is - and all that there can be.

Anyway, I was on the ropes and so sick by the end...Walmart was a lifeline and it allowed me to get outside abd commune with mt thoughts...I listened to music and rolled the window down...and let my thoughts and feelings wash all over me in a cascade of emotions that ran the gamut.

My thoughts were mainly about the people here on the board...I wrote many posts in my head that never made it here.

I just hoped that there was something else - something beyond the pain and suffering.

I'm in a rare window of time...I would love to imagine it might be behind me now...my wish for all of us.

You know, Brenda, Walmart is famous for letting truckers and rv'ers park free in their parking lots:)

Maybe having Walmart provide this complimentary service would be a good idea...they could wash our cars too with a mobile service while we heal in the safety of our metal co****s.

The other thing I would say is thank you for sharing so deeply. Your story helped me by knowing that this phenomenon does exist - but is closeted...perhaps, because we feel ashamed of it.

When I posted it last year, I risked what others might say. But, I've never been afraid about talking about the tough topics.

By doing so, we show others that it's okay - and perfectly normal.

The community benefits from the discussion and we experience personal growth by stepping forward and establishing the boundary.

It speaks to the common chords of humanity - those intangible ties that bond us together and validate the human experience.

See there, I told you it would be okay to get to know me:)

I usually don't bite to the 2nd or 3rd date:)

LOL!

Thanks again for your contribution and participation in this post!

-Craig

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

I haven't been posting because I just don't have the energy. I am physically and emotionally drained. I understand exactly how you feel because I have been there with my husband and now I am there with my only child. I was sitting on the back porch today just thinking I wish we - my daughter, her husband and new baby son, all of us - could just have one day of cancer not being a part of our lives, could wake up refreshed with a new day ahead without this dark cloud hanging over every waking moment and many sleeping moments, too. And today I learned a high school friend lost her battle with cancer. I haven't gotten to know anybody on here that well but Jennie's death really hit hard. She just seemed so invincible to me and was so positive and supportive when my daughter had to switch from Folfox to Folfiri. We have left the negative oncologist behind and moved on and are still fighting. It's all just so hard. I feel we've been so violated by this disease.

The bravery here in the face of this disease astounds me. Everyone here has my admiration and respect. It takes a lot of guts to join a community of people with your same disease, knowing that friendships will be made and many friends lost. I see the love and longing for hope for the future from spouses and other caregivers, and other parents like me, and the day to day living and acceptance of the people with the disease and it just brings it all back, what we went through with Bill's cancer - what I went through, what Bill went through.

And now my precious baby girl. And it is simply more than I can bear. So I'm right there with you and feel we all deserve a great big pity party. All of us. Cry our eyes out. Howl at the moon. Eat pounds of chocolate. Drink ourselves under the table. Cuss and throw things and scream.

Sandy

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I know what you mean about being emotionally drained Sandy... there are times that I read a post and want to respond but I just don't have it in me to say anything. I feel guilty but I see that someone is always around here with their smiling words ready to help someone in a bad place to find hope or comfort. When I feel strong I am here trying my best to help but when I am down I have to let one of you do it.
I think what caught me off gaurd when Jennie left was she was so positive and up beat, I never dreamed she would go any where. Those are the moments that I want to cry, scream, cuss, throw things and eat myself into a coma(I have tried the drinking but that really hurts the next day).
The very idea of you having to watch your daughter do this makes me want to tear up something. I am so sorry that your prescious child in battling, it's not okay, a mom should never have to see their child fight for their lives IT'S JUST WRONG.
May GOD bless all of us.
Brenda

Goldie1's picture
Goldie1
Posts: 251
Joined: Sep 2011

I don't get on here as much as I would like and when I do I play catch up with the posts. So, when I read about people passing it makes me incredibly sad and I think I can't come back here anymore because I am so afraid. Afraid for my husband, kids, and all I hold dear. But, the posts I read on here have also been invaluable and I continue to come back because this board of fine people tells it like it is and sometimes we all need that. I often pass on what I read on here to my husband. I still can not convince him to come on here himself because he is not a big fan of technology. Computers continue to confound him...lol. Anyway, what I am trying to say is, thank you for your excellent post. It has been a tough last couple of weeks. Pat is covered with the Erbitux rash and it is nasty. Our 7 year old golden retriever was diagnosed with cancer and end stage renal failure and it's going to be hard to let her go. But, onward we must go. I'm so glad to hear about your scan results! It lifted me up! Many thanks,

Ellen

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

You just keep going...

I've heard about the Erbitux rash...my first onc called it "fire ant face" because of all the splotching and the scarring. I know some fare better than others...Vectibix would be next in line for me - and since I never mirror other folks, I'm sure I would be like Pat and have it bad. I'm so sorry for him and everyone having to trade this for that.

It's very upsetting...

7 is too young! Oh my goodness, I hate to hear about your Goldie...Sundance made it 13 years but cancer got him too...and Sundance was a cancer hunter...he knew both times that I had cancer by the way he would come and lay on me where the cancer spots were - he was so smart.

Goldens don't always get the breaks they deserve - they are some of the most beautiful dogs in the world...Harley our 2nd, is starting to mature, but still has episodes of "Marley" in him still...I used to hate that, and now I hope he always retains some of that charm.

It will be hard to let go...I'll never forget the day we put Sundance down...he was so sick and had horrible diarrhea that was as black as tar...in the hours preceding his passing, he was still smiling through all of that pain to make us happy.

I'll never have another partner like he was...

I'm glad my news helped you some today...from what I've reading, the timing of this post was pretty good...and it told me what I already knew...the community was hurting.

While I can't cure cancer...I try to help comfort those in need.

Thank you for posting today!

-Sundance/Craig

Annabelle41415's picture
Annabelle41415
Posts: 4263
Joined: Feb 2009

What awesome news about your scan but sorry that your pain is getting so bad. You've dealt with a lot in these past 8 years and as any patient knows, when you have a pain you always think the worse. Now it is imbedded us to the point that we can't simply have a headache without thinking it has spread. We have had terrible news on this board lately, just seems like such a huge amount of sadness, but the good news like what you have just shared with us is needed amoung this heartbreak on this board. Congratulations on your news.

Kim

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

It's funny being in a place in the journey where you can't find any roadmaps to show me the way. My body has responded favorably to the rebuilding process - and it's doing it all on its own.

Normally, I don't panic and stay pretty methodical with my approach to cancer. But, I didn't want to the word "Woops" in a few months, so in this case it was better to check it out.

Still got bad tingling and some numbness feeling...onc says to watch and wait. I'm wondering with all of the stress I've been under this year handling all the fallout from my dad, if I haven't compressed a nerve or something that is causing this.

I type alot at work and we don't exactly have OSHA standard workstations. I'm thinking leaning on the elbows or something has caused this...and maybe my shoulder was just real bad tightening of the muscles back there.

This year has just been in a different way...dad really got even with me by the way he left everything to be cleaned up by us. He's getting the last word when he told me "I'd have to work for it."

He's still calling the shots from the grave...I hope we can wrap that up this year and move on with our lives.

But, I just wanted to let the group know that all is not lost - even though it looks to be sometimes.

Thank you as always!

-Craig

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

I hear you loud and clear. Just the other day I was going over the names of people that were here when George and I joined in 09. Most of them are gone. When George was diagnosed in March, 2009, his primary did not think he would live to see Christmas 09. Well, it is now September 2012 and George is still here, driving me nuts of course, continuing with treatment and still having more good days than bad. I must admit though that he is so very tired of it all. The other day he said is it Tuesday or Wednesday and I just laughed and said who cares. Both of us are no longer working. A financial kick in the pants yes but worth it.

I have seen so many of our friends with so much hope, treatment working, all that stuff then wham, they are gone so very quickly. So many of our friends died so very young (at least young to me anyway), leaving children behind. While their suffering is over the suffering of their children lingers and that is so very hard for me to read. Jennie was so excited for her daughter's upcoming wedding and now she won't be here for it. I sure hope her daughter is radiant on her wedding day as Jennie would want but the hole in that young woman's heart without mom there will be so very hard. I think of Donna's hubby left to raise 4 children, work and keep it all together, a truly difficult task.

So from a member of the class of 09, just keep moving forward, enjoy the good days, kick back on the bad days because you never know what is around the corner. Life goes on. Living goes on.

Love to you and Kim - Tina

PS - Yipppee on the Scan Results!!!

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

But, yeah...

Life always seems very hard for those of us who are left behind to carry on...

I think about the fallen quite abit. They never leave me.

Glad you two have hung it up - good for you! Glad you and the G-man got it all going on:)

I'll persevere...just keeps getting harder now...I have not realized that until this latest string of events...makes you just want to bolt out the door and never look back.

But, some of my friends are still here...so I want to be here with them.

Big hugs and much TX love to you and G...and thanks for dropping in...us '09'ers gotta' stick together!

-Craig

P.S. You like my little sunshine in my lap?

thingy45's picture
thingy45
Posts: 582
Joined: Apr 2011

Don't you dare leave us behind in the dust....... I personally come to Texas to find you and give you a talking to you will never ever forget. No bolting out of doors allowed.

So now I have this of my mind. None of us knows why ones fight is shorter and someone else's is over many years. One is NED and another is not.
I am in this not as long as you have been and I also mourn the fallen every day. Often my mind goes to the pictures no longer on the posts and wonder what they would have answered.
They have fallen, but never forgotten.
We do need you Craig, so do not even think for one moment to take a hike. A posse will come to Texas.

And YES , what a cutie, seeing a ray of sunshine like that is worth to fight another day.
Love you Craig, so glad to hear thing are going OK for you.
On another note I have "linkednd" ( website for professionals) up with some other writers and we are looking in..... WHO WHAT and HOW we can get your book out in the open.
Hugs, Marjan

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

"Don't hurt me."

LOL!

Didn't think I knew any Denmark, huh?

Surprise!

That is so great that you are all brainstormin' for me - how flattering! I had no idea you'd be heading something like this up:)

At a time in my life where I need my friends, but don't know how to ask for them...I find that folks like you are helping me re-define and understand what a real friend really is...just like this book example.

I am humbled...

And if I run, I'll have slipped out under the fence long before you know I'm gone:)

You'll never catch me, LOL!

But, if you did....LOL!

Thank you, Marjan!

Love/Craig

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I know Craig it is easy to get down reading some posts from people we have come to love thru this sites.. I say love even though it is distant... I feel it too.. and I haven't been on here as long as you .. only about a year..

Let's keep Hope alive.

Love you... Donna

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

We can share and love a lifetime - in a short time.

My life would echo a little hollower had I not been blessed to have them in my life.

For if we keep them close to our heart - they can truly never perish.

Love/Craig

Luv2lunch
Posts: 254
Joined: Aug 2010

Hi there Craig.
Mom and I are so happy for you and your news!
Thank you also for being there for us all this time. Over two years now. We can't believe it.
Mom is still doing great and holding her own.
You will always have a place in our hearts Craig.
Lots of love and hugs to you my friend :)
Linda and Mom

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

Nice to see you again and thanks for being on the post!

Your mom responded great...her faith was rewarded:)

I'm so glad that things are going well in your life. I sure remember our early conversations - and the place that you were at then.

I saw you grow in bunches...it was wonderful to witness.

Hugs and love to you both - give mom extra thanks for all those prayers!

-Craig

fatbob2010's picture
fatbob2010
Posts: 395
Joined: May 2012

Craig, This is a great discussion to have and although hard for some to handle. I find that I am in denial at times as to the serious nature of my condition. Even though just had liver resection and returning to chemo next week y attitude of one day at a time is not always realistic. As you have noted I started to lurk and post hesitantly thinking that this group of people were the ones who had beat the odds and in some strange way they would rub off on me. My Oncologist has made no suggestion of a promised cure or any longterm hope; which I found frustrating. As the time has passed there have been many who are non longer with us and the stories they tell resounded like a hollow bell. The war against cancer that I am fighting is a series of battles that are fought one at a time; as a soldier knows battles are not always won.

Now the board is a point of anchor that keeps me centered and more real with my expectations. Seeing others go through the cancer journey has changed my attitude from why me to why not me. At first my emotions were down and I was honestly feeling sorry for myself in what I consider now to be very selfish without regard for the pain my family was feeling. Now my focus is winning the battles I can and being as available as possible to my family.

Thanks for this thread Craig and hope it continues...Please accept my wish that the community grow and share love...Art

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

If cancer has done its job - it has profoundly changed us. It does this by changing us from the inside out first. We're stripped bear, which provides a fertile ground for the seeds that will be planted - they are the seeds of personal growth.

Cancer teaches us to see beyond ourselves - to see that each of us are no more than the sum of the whole that cancer is comprised off.

Very quickly, we see we're not the only ones and that the multitude is hurting.

Cancer tells us this..."The needs of the many - are greater than the needs of the few - or the one."

Your 'wish' is my wish too - and I gratefully accept yours.

The best to you!

-Craig

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

We all have to keep up the good fight! Sometimes the battle with the Big C gives us years, and sometimes it gives us months. Either way time is better then zero time. A friend Jim told me often, "Go out there and slay a Dragon, because tomorrow you do not know your fate." Jim fought a 14 year battle with cancer.

We all have our own path and destiny. How many lives we can affect in the positive is what it is about.

Best Always, mike

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

You'll get no argument on that one, Mike:)

Love your new lifestyle btw...great job!

Your buddy got the best out of it for sure...my goal was 10-years...now only 9-months from now...wow.

Take care, thanks for posting!

-Craig

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

Thanks for sharing this good news. It is the highlight of my day and makes me feel better. I'm so happy for you.

Sandy

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

I'm so happy to have been a part of your day!

Your story is very heartfelt and touching. You've given the ultimate to cancer. I'm sending best wishes for you and your daughter.

I will be in your corner - hands clapping all the way!

Thank you for being here.

-Craig

ron50's picture
ron50
Posts: 1287
Joined: Nov 2001

The old adage that what doesn't kill you ,makes you stronger. It is true in some regards but not in others. I think that I am mentally and emotionally stronger now than I have ever been but physically I couldn't whip a bowl of cream. I share with you the anguish of losing friends. I found Blake and Jennie particularly tough but the greatest lesson I have lerned from cancer is acceptance. Whenever we lose someone from the board I just accept that they have done everything in their power to beat this disease and most have gone above and beyond the call of duty to their family and friends. Then there is the likes of you and phil,John,Maglets and many others who have endured hell on earth and I am not being overly dramatic, just to get to where you are. I read with sadness the post from Buzz but I accept his decision. He too has fought his demons for a long time.
At one stage I decided to opt out and not return to this board but after some thought I had to accept that I am what I am ,a cancer survivor. I saw my nephrologist the other day. My kidney results were not very good,my protein loss is getting very close to the three gramms a day where they feel obliged to start giving me drugs that are worse than the chemo tho I only learned the other day that one of the chemo drugs I was on was withdrawn from use in 2002 in the US and 2003 in Canada because of serious side effects and that there were now less dangerous drugs available. I am sure that those of you on them don't think so. My Doctor was very concerned about my general condition ,my arthritis and neuropathy are worse than they have ever been and I seem to bee all over the place with the diabetes.
For those who don't know me,there are so many new people here,I joined the board late in 2001 . I was originally treated for stage3 c colon cancer in jan 1998 and had a year ,well,48 sessions of 5Fu enhanced with levamisole. So this Jan (if I makeit)I will be 15 years ca free. I live on the east coat of Australia and I have made and lost so many friend on this and other boards to keep track of. There are others on this board like Neons ,foxy, emily ,scouty,staceygleason and many that my poor worn out brain can't bring to mind at this moment who have emerged from ca to live as normal a life as is possible for anyone touched by this disease. I lack Craigs eloquence but I thank him and others like him who despite their own problems continue to support orther sufferers and one day I would love to sit under a shady tree with him and the other and raise a glass in salute to lost friends,best wishes to all Ron.

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

Good to see you, buddy!

Last year's fight was really hard on my renal system. A few more cycles last year and I'd have been on a catheter, maybe for life.

When I first came here, your story hit home with mw, because I could see myself through you..yo've been a landmark to me ever since.

You and I know that you can win the battles, but the fallout, the price we've had to pay, has been steep...and we're not done payin.'

The battlefield that awaits some of us when treatment ends is full of organ compromise and degradated health that stands to worsen as we age - "The Walking Wounded."

I was one of the folks pleading for you to stay back then...glad you did...your story is a cornerstone to the very foundation on which this cancer house sits.

I look forward to that "shade tree"...and the company found under that umbrella:)

Your friend,

-Craig

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Hi, I am a newbee here and am just so touched by your story as well as your strength. You keep on kicking cancers butt!

Lori

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

.

..

buzz pete every one of you ...thinkin about you.

sometimes I just don't get it....sorry best i can do....

mags

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

And thank you so much!

Alot of water has passed under this bridge this decade due to cancer, but I refuse to have it still my voice.

And when the community is behind me - I can't be beat:)

Nice to meetcha'!

-Craig

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

15 months clear - that's great. Thank you for posting your good news. We need to hear it. Although I'm not from the class of 09 (more like 10) I have followed your posts, musings, practical advice and yes "feelings". Thank you for sticking with us. Keep it up.

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

It's hard for me to believe, because...it's never happened until now. It's hard to win late in the 8th year...you expect to be holding on - not winning.

Of course, I'm still waiting for things to return...I've done it 3x now...but maybe, Yo...just maybe...it's gone...is that even possible?

Only Time will tell...

Thank you for watching and posting:)

-Craig

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

You always have such a way with words, and you always reach my heart. I'm so glad you joined our community, and I'm ecstatic that you're still here! The losses are hard to take, and they work on our minds so much at times, but I'm always grateful when we rally and pull together and continue our community here.

*hugs*
Gail

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

Big Billy just loves "your new look."

:)

It looks like "France" is still a distant trip, Gail:) I think back to that early conversation often.

My boarding pass has yet to be validated...that's okay though...I can wait:)

Hugs/Craig

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Glad Big Billy approves! *L* I'm so GLAD that France is still distant for you! It's so sweet that you remember that conversation.

*hugs*
Gail

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Craig, I'll never forget coming in here in 2010 and there you all were, the 2009 people, you let me join right in. I've laughed, gossiped, cried, screamed and darn near had an aneurism from too much laughter at times.
Your thoughts pretty much mirror mine at this moment. Cheryl and Jennie leaving so quick and now Clift saying his goodbyes to us, seeing Kerry go, Eric, Donna, Lisa,John so many...brings a great sadness that is sometimes overwhelming.
But it has helped me now with this second round coming, if I hadn't known what to expect this would have been a shock to me. I would have been at my wits end like I was at the beginning of this cancer. This time I didn't overreact, didn't have to call anyone to get me out of that tree, I knew it could happen, I also know that I can continue to do things with my onc in order to continue living longer. I know that I could die, and when that bridge comes I'll cross no matter how disappointing it will be that I couldn't hang in there. But I also know I could also live, I've got you to show me that, got Mags and a few others, so I still got HOPE. And I've got this family, sure isn't the same Craig, we got so emotionally attached to those that are leaving or have left us, and I think we're trying harder not to now. But until my time comes, I'm still happy to have all the cheerleaders here with us on the board, we got each other, kind of reminds me of the Sonny and Cher song, "I got you babe". We got each other.
Love you man,
Winter Marie

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

Very insightful..the part about us trying so hard "not too" get too close. I feel it too. That does not work for me...I've got to be emotionally vested to be effective. I can't be dispassionate about what I say, or it rings hollow.

Folks must have thought I was nuts with some of the stuff I said...I was further up the path and you all were just getting started...alot of folks could not see my perspectives then, but you guys did listen.

Now, it's probably getting a little clearer...

I've watched you grow from where you started then...Jenny too:) And scores of others as well...it's been a treat having a front-row seat for all of it.

I'll never forget your w/end post that time about "blowin' smoke"...LOL! You've come a long way, baby!

'09 was a special time for me - a time of naivete - and a time of innocence...

You know I'm with you still and know you will respond favorably and get back clear:)

Big TX Hugs!

-Craig

So Worried
Posts: 111
Joined: Aug 2012

I don't know you (yet) but I just want to tell you that your post was beautiful. Thank you so much for writing it. We all need to hear inspiring stories and good news. I am so happy your scan is clear and I am hoping that for you....for MANY, MANY years!!!!

Just a new person......

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

Nice to meetcha!

Thank you so much for your kind words:)

It's been a long, hard fight - I'd like to have a shot at somrthing now...time will tell me.

Good things can happen...my story is a good example...I wanted the new folks to "know."

Fight hard!

I'll be here with you.

-Craig

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