Not the Day or the Way I Wanted to Mark 9-Years:(

Sundanceh
Sundanceh Member Posts: 4,392 Member

First, let me apologize in advance for being a downer after barely being able to enjoy the highest of highs for only a brief moment.

That's the story of my life...

Whenever I can 'get happy', the smile always gets knocked off my face Frown

I had a completely different post (just sitting ready to go for today) to mark the 9-year day...

So, we'll have to go with this postfor now until I can find out more...

I was in the onc's office for just a blood-lab visit on Friday...port was plugged and I had to argue with the nurse for TPA, so we didn't get blood and they sent me up to the doctor.  I kept telling her for what?  To say hello?  No blood?  Nothing to talk about with him...

When I got up there, this other nurse was up there and said your doc wants blood - and she drew it right there on the spot, she was good too:)

Anyway, the consult went good and some of the bloodwork had come back, but not much of it.....the CEA was still pending, but we talked about it.....

Last time it sat about 2.8 I believe...but, it has been trending slightly upwards in very small increments.  The doc brought this up and there was a look on his face that said CONCERN...somehow, I didn't interpret this as anything, but his expression did let me know that he was worried and conerned about what he was seeing as we moved through the cycles. 

We left with..."I'll call you if there is anything substantial with the CEA...."

It's Monday now...I just got a call a few minutes ago from my doc...and this is a guy that doesn't call to say Howdy.  He said simply..."Call me."

Oh, $hit!

I just got that sinking feeling we get in our guts; that sort of nauseous feeling that comes over you.  I thought for a minute if I should mention this to anybody at all - it may be nothing after all.  But, the doc doesn't believe it - and neither do I now.

I felt before I said anything, I should tell my wife about the possibilities...she should be the first to know....she was at a doctor's office herself and so I told her what I knew...I couldn't get a read of what she was thinking....she was quiet and I was giving her the numbers etc.  And then I let her go for her consult....I hated to say anything to her at all, but felt it was right to make her aware of possible future events.

So, now the onc wants to move the CT scan immediately up (can't argue with this) and I'm waiting on the nurse to help me get this scheduled so we can see what's going on.

CEA was 2.8 last visit.....three months later it now sits today at 9.2.

I realize that it can be many factors and I am old school with this stuff.....but it's a disturbing trend and now it's not going up in tenths of a tenth percent....

The post that I wanted to release was the marking of 9-years with a cancer diagnosis....and 2 years in a remissive state....and my theory on why I was finally staying clean....one I've been waiting to talk about for so long....oh well, perhaps another day now.

I guess I'm really not surprised if we find anything - what will puzzle me more is why it took so long for it to get her? 

If it is cancer again - that will make #4....

Feels like a sucker punch to my ribs...its amazing how quickly your mind and thoughts turn once again when confronted with the possibilities...

I'm sorry to bring you down after getting you so high.....maybe I should have waited, but I just had the air let out of my tires....and I just can't get to enjoy the things I've tried to work so hard for. 

Well, at least we're published....I'm going to go and finish up sending out the paperwork and get my mind off it - I can't change it....I'm just disappointed if it is the case, because it tells me what I've already known - and then let myself believe wouldn't happen anymore.

There will be time to talk about things....

Happy 9th!!!!   Now, do I know how to celebrate or not?

LOL!

Im

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Comments

  • LindaK.
    LindaK. Member Posts: 506 Member
    You BETTER celebrate

    Keep on that high from last week!  Double $hit, triple $hit, a zillion $hit!!  I know that feeling, but let all the good energy from last week carry you through the next few days, appointments, etc.

    Happy 9th Anniversary, you deserve to celebrate!  I will celebrate with  you today no matter what.

    Linda

  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    LindaK. said:

    You BETTER celebrate

    Keep on that high from last week!  Double $hit, triple $hit, a zillion $hit!!  I know that feeling, but let all the good energy from last week carry you through the next few days, appointments, etc.

    Happy 9th Anniversary, you deserve to celebrate!  I will celebrate with  you today no matter what.

    Linda

    Crapy CEA .......hope your

    Crapy CEA .......hope your scans are clear Undecided     When did you last have scans?? 

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    smokeyjoe said:

    Crapy CEA .......hope your

    Crapy CEA .......hope your scans are clear Undecided     When did you last have scans?? 

    3 months ago...

    CEA was a good indicator for my colon and my liver.....

    Not a good indicator when it was in my lungs....

    We'll just have to see.....wish I could pretend that it's nothing...I'm ready to scan right now and get it over with. 

    It's like I just took a trip back in time....it's that feeling of feeling like you're frozen in your tracks...and you have to force yourself to do something else but stare and contemplate something totally different than you were expecting to when you got out of bed...

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Sense of Urgency...

    Now these guys are really making me think....

    I just a call from the gal who just wanted me on the phone (for the other gal who was trying to set up my scans...)

    Normally, everything is just scheduled and released through MyChart......not this time though.

    The head nurse I always took and that takes pretty good care of my scheduling issues and whatnot, sounded kind of down when talking to me....talking in low and hushed tones.  I know this is from talking to her Friday, when I was so up and bubbly and making everyone laugh etc.

    Then the other shoe drops (maybe) and it's a complete....180....she said 'bummer.' 

    Anyway, I'm surprised about the personalized care...they are taking it seriously...and that makes me feel funny somehow.  Like they already know something I don't...

    Trying to focus up here at work.....but just having a difficult time with it today....wife is crying, because she's a 9th year caregiver and is probably thinking Oh No, not again.

    Just told her no worries....

    They are going to MRI the liver (suspicious area) for abdomen / pelvis......and then CT the chest...both with contrast.  It will be a full day with consult two days after scans. 

    I guess we'll know then....

     

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Craig

    I know that the CEA is worrisome, but please don't let it overshadow your success in getting your article accepted.  That was such a big WIN for you and all of us who live vicariously thru your writings.

    Unfortunately some of us seem destined to face challenge after challenge in our life.  That you have survived 9 years and are getting published are a great testament to your strenght and courage.  Without the trials and tribulations you would not have found your VOICE again, nor your alter ego.

    You know the drill...don't over anticipate bad news...take it day by day ... put one foot in front of the other.

    You have a darn big family around the world who are here to support you no matter what.

    When you need a hug, justs wrap up in that big star and feel the love.

    Hugs and love,

    Marie who loves kitties

     

     

  • Semira
    Semira Member Posts: 381 Member
    Oh my...

    Oh my dear Craig,

    what a storm instead of a sunny calm afternoon. I understand all your thoughts and worries and have no really advice to offer, just a warm hug from far away. Hope for fast results and may them be as good as possible.

    It is what it is (or better will be what it will be) and you will face it in your special Lion style (miss that picture btw)

    Thinking of you!

    Petra, Cologne, Germay

  • Semira
    Semira Member Posts: 381 Member
    .

    double

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Semira said:

    Oh my...

    Oh my dear Craig,

    what a storm instead of a sunny calm afternoon. I understand all your thoughts and worries and have no really advice to offer, just a warm hug from far away. Hope for fast results and may them be as good as possible.

    It is what it is (or better will be what it will be) and you will face it in your special Lion style (miss that picture btw)

    Thinking of you!

    Petra, Cologne, Germay

    Special Delivery, Petra:)

    The Lion Roars...

  • Semira
    Semira Member Posts: 381 Member
    Sundanceh said:

    Special Delivery, Petra:)

    The Lion Roars...

    thanks !

    go on big cat :-)

  • HollyID
    HollyID Member Posts: 946
    Celebrate!

    Craig, I want you to celebrate!  This is a happy 9th for you! 

     

    I can imagine how you're feeling though.   I'd feel the same.  You're a strong man.  I know that in my heart.   I'm hoping the CEA is a fluke.  Get your scan and let us know.  Know that I'm sending virtual hugs and love across the miles. 

     

    Holly

  • HollyID
    HollyID Member Posts: 946
    Celebrate!

    double

  • HollyID
    HollyID Member Posts: 946

    Dear Craig

    I know that the CEA is worrisome, but please don't let it overshadow your success in getting your article accepted.  That was such a big WIN for you and all of us who live vicariously thru your writings.

    Unfortunately some of us seem destined to face challenge after challenge in our life.  That you have survived 9 years and are getting published are a great testament to your strenght and courage.  Without the trials and tribulations you would not have found your VOICE again, nor your alter ego.

    You know the drill...don't over anticipate bad news...take it day by day ... put one foot in front of the other.

    You have a darn big family around the world who are here to support you no matter what.

    When you need a hug, justs wrap up in that big star and feel the love.

    Hugs and love,

    Marie who loves kitties

     

     

    Marie, well said!

    (NM)

  • tachilders
    tachilders Member Posts: 313
    9 years is a gift that many

    9 years is a gift that many don't get with this disease, so celebrate it!!!  Best of luck with your tests, and we all hope it is not a recurrence.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    9 years is a gift that many

    9 years is a gift that many don't get with this disease, so celebrate it!!!  Best of luck with your tests, and we all hope it is not a recurrence.

    Yes It Is, Tedd....

    I've gotten a couple more than I should have been given...though it wasn't handed to me...

    Friday, I was talking with my onc and I was bringing up 9-years and 2 years of it finally continuously remissive...and what it all meant?

    He looked away and wistfully replied.....the 9-years.

    And this morning, I understood that a little bit better than I did three days ago when I last saw him.

    It's a lifetime in the colorectal world, which was why I had decided to originally post (lots of new folks here).

    Thanks for your post and will hope right along with you that this is erroneous.  Hope all is still going well with you too.  Best of luck with the results you've been waiting on as well. 

     

  • lesvanb
    lesvanb Member Posts: 905
    Hugs my brave Lion!

    and hugs to Kim.

    I agree with many about celebrate what you can celebrate!  ...and I understand about the thunderbolt that's just gone through you.  Crap. 

    The theme from the all womens bike ride that I participated in on the June 1 weekend in Lewiston, ID. (supports cancer reserach at the Huntsman in SLC among others) was: Keep calm and ride on! It's written on the orange and yellow plastic bracelet on my right wrist and I will think of you when I look at there.

    Right here with you..

    Love, Les

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Dear Craig

    I know that the CEA is worrisome, but please don't let it overshadow your success in getting your article accepted.  That was such a big WIN for you and all of us who live vicariously thru your writings.

    Unfortunately some of us seem destined to face challenge after challenge in our life.  That you have survived 9 years and are getting published are a great testament to your strenght and courage.  Without the trials and tribulations you would not have found your VOICE again, nor your alter ego.

    You know the drill...don't over anticipate bad news...take it day by day ... put one foot in front of the other.

    You have a darn big family around the world who are here to support you no matter what.

    When you need a hug, justs wrap up in that big star and feel the love.

    Hugs and love,

    Marie who loves kitties

     

     

    Hi Marie

    I was born under a bad sign:)

    I'm a Cancer with Cancer....luv3jay and I used to joke about that one:)

    Thank you once again for your kind words and I don't know why I feel so badly about this at the moment....

    Well, yeah I do....

    I'm thinking about how hard I will have to climb another hill - just as I was hoping to finally climb out of Life's Hole.  It seems that I'm climbing uphill in a rain storm....and just as soon I try and reach over the top and try to pull myself up.....back down the hill I roll...

    I'm probably putting the cart before the horse....I have been hurting alot the past six-months but have not said anything - was waiting on regular scan cycle to reveal or not.

    I'm feelng a mix of emotions right now....and was feeling great this morning before his phone call.....I had a nice post written for this occasion about 2-weeks ago, just sitting for June 9th....which also marked my 4-years with this board. 

    The Specter of Cancer has temporarily removed the colors from my sight - red looks grey and yellow white - and I'm left to decide which is right - or which is an illusion...

    I thought I would get more than a couple of days out of that last post...and somehow, I just never figured he'd call.....thought CEA might 'barely' be going up, but not that kind of rise....it just doesn't sound good.  I can't see if it would be inflammation or an infection....

    I'm not scared....just get that feeling that you already 'know'....and how much work and good fortune that would take out of me - just to (maybe) get me back to where I'm writing you from right now.  And that's the damnation of it all for me if that turns out to be true again.  Thank you for your reassuring hug!

    This morning, I thought I knew what Survivorship meant....

    Now, that definition has potentially been redefined....and my meaning now feels lost...

    It's like a lightswitch.....I was happy about the article and working happily towards getting the editor the stuff she needed.....I was planning on writing Jen/Chels the post they requested and it was gonna' be good too....they asked me how did I cope with cancer for this long?

    Just the threat of 'rain' has dampened my enthusiasm, where before I was ready to come out of the gates blastin' away with good stuff.

    I guess I'm just going back through the Acknowledgement Phase of Possible Recurrence again today....and I'm just fleshing out my feelings by talking with each of you today.....it's a good thing as I can't concentrate too much today....

    Tomorrow will be better...and next week, we'll know something one way or the other...

    My mind is drifting now....I was going to tell Jen/Chels how I was just starting to see a (maybe) life after cancer....and I was starting to feel some hope.....we've been working on our place since wrapping dad to trying to get our lives right - I finally got some good news with the article acceptance....

    And the big thing I was going to tell them is my shift in attitude from the 1st Chapter of the book I wrote about 2-years ago now...my thoughts had finally started to drift away from that and was moving in another direction.....I was excited to talk with them about that.  Excited to talk with LindaK about some relationship stuff too.

    Now, I'm thinking about when I would have to leave work again - would I make it back this next time - would we able to hold the line during this fight - would surgery be an option - etc. etc.

    Right now, though I just feel a little bit empty...

    I talk about Empowerment and not letting cancer dictate our actions...but it does, doesn't it?

    Certainly, at times it sure does... 

    And all it takes is a phone call or a bad scan to change our whole point of reference....and that's what I can't stand about cancer.  Some days, it makes you want to fight - and other days, it wants to make you roll up like a pill bug.

    Thanks for letting me get some of these early feelings out of the way....

    If Chicky were here, she'd say that her lion had a thorn in his paw:)

    Ok, I smiled....see?

    I'll be alright, just frustrated at what I might have to face again...

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    Sundanceh said:

    Hi Marie

    I was born under a bad sign:)

    I'm a Cancer with Cancer....luv3jay and I used to joke about that one:)

    Thank you once again for your kind words and I don't know why I feel so badly about this at the moment....

    Well, yeah I do....

    I'm thinking about how hard I will have to climb another hill - just as I was hoping to finally climb out of Life's Hole.  It seems that I'm climbing uphill in a rain storm....and just as soon I try and reach over the top and try to pull myself up.....back down the hill I roll...

    I'm probably putting the cart before the horse....I have been hurting alot the past six-months but have not said anything - was waiting on regular scan cycle to reveal or not.

    I'm feelng a mix of emotions right now....and was feeling great this morning before his phone call.....I had a nice post written for this occasion about 2-weeks ago, just sitting for June 9th....which also marked my 4-years with this board. 

    The Specter of Cancer has temporarily removed the colors from my sight - red looks grey and yellow white - and I'm left to decide which is right - or which is an illusion...

    I thought I would get more than a couple of days out of that last post...and somehow, I just never figured he'd call.....thought CEA might 'barely' be going up, but not that kind of rise....it just doesn't sound good.  I can't see if it would be inflammation or an infection....

    I'm not scared....just get that feeling that you already 'know'....and how much work and good fortune that would take out of me - just to (maybe) get me back to where I'm writing you from right now.  And that's the damnation of it all for me if that turns out to be true again.  Thank you for your reassuring hug!

    This morning, I thought I knew what Survivorship meant....

    Now, that definition has potentially been redefined....and my meaning now feels lost...

    It's like a lightswitch.....I was happy about the article and working happily towards getting the editor the stuff she needed.....I was planning on writing Jen/Chels the post they requested and it was gonna' be good too....they asked me how did I cope with cancer for this long?

    Just the threat of 'rain' has dampened my enthusiasm, where before I was ready to come out of the gates blastin' away with good stuff.

    I guess I'm just going back through the Acknowledgement Phase of Possible Recurrence again today....and I'm just fleshing out my feelings by talking with each of you today.....it's a good thing as I can't concentrate too much today....

    Tomorrow will be better...and next week, we'll know something one way or the other...

    My mind is drifting now....I was going to tell Jen/Chels how I was just starting to see a (maybe) life after cancer....and I was starting to feel some hope.....we've been working on our place since wrapping dad to trying to get our lives right - I finally got some good news with the article acceptance....

    And the big thing I was going to tell them is my shift in attitude from the 1st Chapter of the book I wrote about 2-years ago now...my thoughts had finally started to drift away from that and was moving in another direction.....I was excited to talk with them about that.  Excited to talk with LindaK about some relationship stuff too.

    Now, I'm thinking about when I would have to leave work again - would I make it back this next time - would we able to hold the line during this fight - would surgery be an option - etc. etc.

    Right now, though I just feel a little bit empty...

    I talk about Empowerment and not letting cancer dictate our actions...but it does, doesn't it?

    Certainly, at times it sure does... 

    And all it takes is a phone call or a bad scan to change our whole point of reference....and that's what I can't stand about cancer.  Some days, it makes you want to fight - and other days, it wants to make you roll up like a pill bug.

    Thanks for letting me get some of these early feelings out of the way....

    If Chicky were here, she'd say that her lion had a thorn in his paw:)

    Ok, I smiled....see?

    I'll be alright, just frustrated at what I might have to face again...

     

    Hope

    Craig, you have given me such a gift and while I cannot write as eloquently as you do, I am wishing you HOPE.  I have not been in your shoes, but your past words have given me hope.  Please share all your feelings with your wife tonight.  As a wife, I would also feel sad, scared, etc. but would want to share those feelings with my husband.  It's always better to have people you love in your corner.  You have so much good energy from everyone on this board you have reached out to.  Please feel that energy and let it comfort you as you wait.  Please keep your thoughts positive as I will...

    Sending you peace,  Linda

  • marbleotis
    marbleotis Member Posts: 720 Member
    9 years is a reason to celebrate!

    Craig,

    I know it is very hard not to over-analyze every tiny thing right now.  Please just take a breath, get the tests and make decisions from there.  You are a great source of strength for others, now it is our turn to be a source for you.

    Our minds can be the enemy while we wait for these tests.

    Do not let this cancer take anything else from you.  Please keep us posted.

    Remember to exhale!

    Love to you and your family

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    CC and celebr...

    Now, do I know how to celebrate or not?    

    ...with CC?   When you were younger, "Canadian Club"?  More recently that "other" board.  For us, cimetidine and celebrex(recently). Perhaps some curative cutting.

    Deep breaths, perhaps its a slower moving solitary site and CEA that can still be stuffed back in the bottle with something more polite.    "Better living through [improvised] chemistry".  Molecular changes may suggest molecular answers are also needed.

  • PhillieG
    PhillieG Member Posts: 4,866
    Gregg

    Are you going to catch me or what!?!? Stop this nonsense and kick cancer's A$$ please?
    Hang in there Buddy...sending positive thoughts and all that stuff...
    ~Harry Potty-Mouth