Unplanned Scan + Set My New 'Clear' Record

k44454445

hi
i wanted to thank you for the heartfelt post. it certainly helps me to read posts such as yours. thank you for sharing the great words of wisdom that you have! we are blessed to have you!!! glad to hear your good results! i was dx dec 2010 & was dx june 2012 with metastatic ca. wish i had found this site in 2010.
hugs
judy

smokeyjoe

k44454445 said:

hi
i wanted to thank you for the heartfelt post. it certainly helps me to read posts such as yours. thank you for sharing the great words of wisdom that you have! we are blessed to have you!!! glad to hear your good results! i was dx dec 2010 & was dx june 2012 with metastatic ca. wish i had found this site in 2010.
hugs
judy

Thanks for the good news
Thanks for the good news Craig.....ya know we really need to hear from those that do carry on for years!!! GREAT NEWS WITH YOUR SCAN!! Ya know just over a week ago my brother in law had a "mis step" going to the bathroom, fell broke his hip....had the hip surgery, things going great, he was very pro-active in doing what you're supposed to do after this surgery....then one night it just all seemed to go down hill, they think he aspirated something he has pneumonia, is on a machine to breath for him, tube feeding, unresponsive, and has been this way for a week so far in ICU. WTF??

A1D2N3

Inspiration
Have been following the board for some time... but have not really responded...you have inspired me to comment......in regards to your honesty...openness and willingness to share...keep it up....you and the rest of the board are such a gift to others!! Love and Prayers!!

Sundanceh

A1D2N3 said:

Inspiration
Have been following the board for some time... but have not really responded...you have inspired me to comment......in regards to your honesty...openness and willingness to share...keep it up....you and the rest of the board are such a gift to others!! Love and Prayers!!

A1
Thank you for stepping out of the shadows - and into the light!

Your comment is gratefully accepted - now, don't be a stranger:)

-Craig

Sundanceh

smokeyjoe said:

Thanks for the good news
Thanks for the good news Craig.....ya know we really need to hear from those that do carry on for years!!! GREAT NEWS WITH YOUR SCAN!! Ya know just over a week ago my brother in law had a "mis step" going to the bathroom, fell broke his hip....had the hip surgery, things going great, he was very pro-active in doing what you're supposed to do after this surgery....then one night it just all seemed to go down hill, they think he aspirated something he has pneumonia, is on a machine to breath for him, tube feeding, unresponsive, and has been this way for a week so far in ICU. WTF??

WTF Indeed?
Wow, Smoke'Em...

Things just change so much, so quick, in this world.

That's the reason I'm trying to pick 'em up...and lay 'em down...while I can...before...

Tell "BIL" to get well...I hope he can come off the machine...that one is always so tough to watch.

Hugs?

Okay...(((L))))

-Craig

Sundanceh

k44454445 said:

hi
i wanted to thank you for the heartfelt post. it certainly helps me to read posts such as yours. thank you for sharing the great words of wisdom that you have! we are blessed to have you!!! glad to hear your good results! i was dx dec 2010 & was dx june 2012 with metastatic ca. wish i had found this site in 2010.
hugs
judy

Hi Special K:)
Nice to meetcha, Judy:)

It took me 5-years to get here:) I'm a slow learner:)

I am so glad this post has helped you...there's lots of good stuff on this thread...when you bite into this sandwich...you'll know you ate something:)

LOL!

You are so welcome! I'm glad to still be of value here.

Thanks for posting!

-Craig

Sundanceh

relaxoutdoors08 said:

Craig ....Thank you for being here
Craig,
I count myself the class of 2010. You have been here describing your experience....showing such courage and strength...Giving support and Hope for all of us. I too grieved the loss of Jennie. I will always remember her encouraging posts and how I laughed when she shared her morning routine ... hair... teeth....
WOW, so glad you made a new record. I am approaching my 2 year post dx and am feeling such anxiety. You and the others here shown me that one regroups and fights another day.
Thank you so much for being here for us.
NB

Hi NB:)
Yep, Jenny was one of my first reclamation "projects." You wouldn't have known her then...scared and frightened out of her mind...watching how she grew was something that I will never forget...

It's funny for me to talk to folks who are scared silly...and then over time, they grow into their new role and no longer need you anymore. This must be akin to being a parent and having the child fly away from home.

It's painful...but, it's wonderful...and part of the process. I'm glad to play my role in helping them reach the next level.

Thank you for having me!

-Craig

Sundanceh

mukamom said:

Class of 09
Really 08, as Robert was dx 12/08. I didn't find this board until a year or so later.
Will he make it to the 5 year mark?? Will he be one of the lucky ones who makes it past that milestone? Most times I think yes, he's beaten it 3x already, then I reflect back on those folks here that didn't. There are holes on this board that never will be filled.

Am so, so happy your scan was clear. Time to kick up your heels and live a little.
Or go wrestle a steer (isn't that what y'all do in Texas?)

Angela

Angie!!!
Hi:)

You're right, we've got holes that will never be filled.

The best we can do is spackle over the gaping wound - and always keep a part of this person in our memory - so that they didn't fade away from sight - they merely took up residence in our hearts.

Steer wrestling?

Best I can do is flash the "Hook 'Em Horns" sign:)

No time to kick up our heels this year, we're too busy kickin' **** and trying to close out my dad's chapter, and pick up the broken pieces of our lives from all these years of cancer...so we can finally break into the clear...and catch a new wave...

I hope part of that wave will be helping people with cancer...cope.

The time for celebration is coming, I hope. I talked to the Big Guy over the weekend in an impromput heart to heart...and I asked for direction. We'll see which road I'm pointed down next:)

Thanks for posting, Angela...so nice to see you again.

-Mr. Lion

annalexandria

A little late to the party here...
but that is AWESOME news!! You are an inspiration to all of us as we struggle along this dark path...you help shine a light that makes the journey a little brighter. Loads o' hugs from Seattle~Ann Alexandria

Sundanceh

annalexandria said:

A little late to the party here...
but that is AWESOME news!! You are an inspiration to all of us as we struggle along this dark path...you help shine a light that makes the journey a little brighter. Loads o' hugs from Seattle~Ann Alexandria

"Where's Ann?"
I was going to put in an entry titled, "Where's Ann?"

LOL!

You must have felt the vibrations I was sending out:)

Thanks, Ann...it is good news and I feel very fortunate still. I've been so conditioned to getting bad news so long, that's it's hard to accept the good stuff when I see it. It's a condition that I hope that time will continue to soften with positive reports.

Please reserve a spot on the library shelf for me...I hope one day to occupy that slot:)

Take care and many hugs as well!

-Craig

toyfox

Dear Craig
This board has been so sad have not wanted to post.
I am so happy for you that your scan is clear. You mean
so much to so many.
We had good news too. My husbands 3 month blood work
was excellent....not one low or high mark....cea normal.
Many Hugs....Linda

donnare

Hi Craig,
Loved this post
Hi Craig,

Loved this post ... I haven't been on but check in from time to time, and your posts are always beautiful and inspiring. I know how hard it has been -- I am from the class of 2009 also, and you and Eric and Donna were the first people to reach out to me and give me hope when I thought there was none. It hurts to think of Eric and Donna -- so very kind and loving to me while dealing with so much themselves. The losses did kind of make me shy away, so I know exactly what you mean.

I needed this today --- I needed to hear that you are 8 years out, even after all you've gone through. I am sitting in Brian's hospital room --- the first clinical trial failed and his tumors grew on the liver and unfortunately there are now spots in both lungs. He has had a pretty rough time lately.

So today he was supposed to start another Phase 1 clinical trial -- one that is targeted at GI cancers and the docs here and at Penn think it looks promising, even though they cautioned me that Phase 1 trials only work about 5-10% of the time. (Better than 0%, right?)

So we get up here to Fox Chase, scared of the new drug but hoping for some relief from the pain for him in addition to a halt of the disease growth, and after taking his blood they come back and tell us he cannot start the trial because his bilirubin levels are too high. So they admit him and tomorrow are going to try to do a stent in his liver to get the levels to come down so he can start the trial next Monday. They aren't sure this is going to work, and I don't know what this means in terms of future treatment. I was told that without treatment he may not have very long.

So I am sitting in his room while he is at ultrasound and I am thinking "what do I pray for? a miracle, again? Didn't I already get a miracle - all the docs say he has beat the odds by being around 3 years after diagnosis, relatively healthy. Am I being selfish not wanting to give up hope?".


And then I read you post, and see the 8.3 years, and I feel a little stronger because I read it and see you surviving this awful disease, and I dare to hope again -- maybe this is another bump in the cancer highway for Brian.

Thanks for all you do for everyone on this board. You have a beautiful spirit and it has reached out to many when they needed it most!

So glad your scans are good -- wishing you many, many years of continued good news, if not a miracle of healing. And as you so aptly said "much love and healing for the community".

Stay well friend,
Donna

SharonVegas

Craig,
Thanks for you post
Craig,
Thanks for you post on clear scans. We need these happy stories on this board. I, for one, am grateful you posted it. My wife and I read the board last Friday along with this post and all the replies. The wife had a good cry afterward. She needed it. She seems "lighter" now. This board works in mysterious ways.......
SharonVegas

Sundanceh

SharonVegas said:

Craig,
Thanks for you post
Craig,
Thanks for you post on clear scans. We need these happy stories on this board. I, for one, am grateful you posted it. My wife and I read the board last Friday along with this post and all the replies. The wife had a good cry afterward. She needed it. She seems "lighter" now. This board works in mysterious ways.......
SharonVegas

Howdy SV
I can't tell you how happy I am to here that news! It's like tossing a cracker to a starving man:)

Tears are nature's lubrication for the soul - and all of us need an oil change every now and then. It is a necessary cleansing process that does help to unload the tremendous emotional burdens that weigh us down to the point where we feel our hearts are going to stop beating.

"Lighter" is a good term for how you feel afterwards. In effect, you are lighter as you left those said burdens at the curb and reset your emotional barometer, so that you can continue on.

Suppression is our enemy...eventually, bottled feelings always make their way to the top...just like the steam in a tea kettle when it reaches a boil and begins to whistle...nature gave us this outlet as a coping method with the rigors of life.

It took me about 43 years to get in tune and learn how to understand the mechanism of a tear - and what it's purpose is for...being in touch with feelings...and having the permission from one's self to express them is freeing - it's liberating - and it's very empowering.

And in many ways, tears help facilitate the path of healing...one drop at a time.

The board does work in mysterious ways...sometimes thought, it needs a nudge...:)

I've found the outpouring of real human feeling in this post to be most refreshing and I feel the collective exhale of the community inside these margins.

I'm so glad that you "invested" the time to read through this whole post...it is chalk full of some good stuff...some real stuff.

It's very nice to meet you and I hope that your wife does very well:) I'll be following your progress. Take care for now.

And tell your wife for me, "Thanks for reading."

And thank you for sharing your story and those personal feelings. It always draws me closer to folks, when I can read about all of the commonality that resides within each one of us.

Through that process, we grow as a community.

We must constantly re-seed and start the process anew as new recruits arrive steadily throughout the year. While most come here for the knowledge, I also feel that healing comes from bonding with one another - and once bonds are formed, then sharing can start...and from there, the road seems a little less empty.

Best of luck to you both!

-Craig

Sundanceh

toyfox said:

Dear Craig
This board has been so sad have not wanted to post.
I am so happy for you that your scan is clear. You mean
so much to so many.
We had good news too. My husbands 3 month blood work
was excellent....not one low or high mark....cea normal.
Many Hugs....Linda

W2Go Linda!!!
Good news always comes in 3's...we just need one more good story to make a quorum:)

I know it's been difficult lately for everyone...

It sounds like you and the hub have a reason to pause and give thanks...that is wonderful news to hear...congrats to you both...and now you've bought yourself a hall pass, so that you can wander around and enjoy the stroll.

I'm happy for you both.

As always thank you for your kindness and support!

-Craig

annalexandria

Sundanceh said:

"Where's Ann?"
I was going to put in an entry titled, "Where's Ann?"

LOL!

You must have felt the vibrations I was sending out:)

Thanks, Ann...it is good news and I feel very fortunate still. I've been so conditioned to getting bad news so long, that's it's hard to accept the good stuff when I see it. It's a condition that I hope that time will continue to soften with positive reports.

Please reserve a spot on the library shelf for me...I hope one day to occupy that slot:)

Take care and many hugs as well!

-Craig

You will be on that shelf one of these days,
I'm certain of that! Where shall we put you? In the 600s, with cancer? Or in the biography section? I'm thinking both, cover all the bases!

Fight for my love

You are my true hero as
You are my true hero as always...I have more reasons to keep my head up living in a foreign country and being strong.Thank you,my big brother,you inspire everyone,you inspire my husband,and you inspire me.Once I think of you and many other dear friends on this board,I am not worried about little things in life and have more strengh to move on.Thank you.

Sundanceh

donnare said:

Hi Craig,
Loved this post
Hi Craig,

Loved this post ... I haven't been on but check in from time to time, and your posts are always beautiful and inspiring. I know how hard it has been -- I am from the class of 2009 also, and you and Eric and Donna were the first people to reach out to me and give me hope when I thought there was none. It hurts to think of Eric and Donna -- so very kind and loving to me while dealing with so much themselves. The losses did kind of make me shy away, so I know exactly what you mean.

I needed this today --- I needed to hear that you are 8 years out, even after all you've gone through. I am sitting in Brian's hospital room --- the first clinical trial failed and his tumors grew on the liver and unfortunately there are now spots in both lungs. He has had a pretty rough time lately.

So today he was supposed to start another Phase 1 clinical trial -- one that is targeted at GI cancers and the docs here and at Penn think it looks promising, even though they cautioned me that Phase 1 trials only work about 5-10% of the time. (Better than 0%, right?)

So we get up here to Fox Chase, scared of the new drug but hoping for some relief from the pain for him in addition to a halt of the disease growth, and after taking his blood they come back and tell us he cannot start the trial because his bilirubin levels are too high. So they admit him and tomorrow are going to try to do a stent in his liver to get the levels to come down so he can start the trial next Monday. They aren't sure this is going to work, and I don't know what this means in terms of future treatment. I was told that without treatment he may not have very long.

So I am sitting in his room while he is at ultrasound and I am thinking "what do I pray for? a miracle, again? Didn't I already get a miracle - all the docs say he has beat the odds by being around 3 years after diagnosis, relatively healthy. Am I being selfish not wanting to give up hope?".


And then I read you post, and see the 8.3 years, and I feel a little stronger because I read it and see you surviving this awful disease, and I dare to hope again -- maybe this is another bump in the cancer highway for Brian.

Thanks for all you do for everyone on this board. You have a beautiful spirit and it has reached out to many when they needed it most!

So glad your scans are good -- wishing you many, many years of continued good news, if not a miracle of healing. And as you so aptly said "much love and healing for the community".

Stay well friend,
Donna

Howdy My Friend, Donna Re:)
You know what post I just remembered back from 2009?

Just like you said, the one where Chicky first reached out to you...

She said, "Hi, Donna - I'm a Donna too..."

Makes my eyes well up...

You know I never forget any conversation or exchange with anyone here that I've ever talked to - and that's a fact. I can go down the list, past and present, and remember what we said, no matter how far back it goes.

"What do you pray for?"

Hope, without a doubt...pray for hope...

For without Hope, the people will perish...

No, you're not selfish for asking for hope, Donna. Quite the opposite actually - you're feeling what every caregiver feels - hope, and a chance for your beloved.

The last three-years has changed me up here...I wrote a big chapter in the book about the Patient and Caregiver's perspectives as the battle winds on...and possibly winds down...

And of course, the aspect that a caregiver sees it, varies much differently than that of the patient. From all of the stories that I have read, the greatest grief and the greatest anguish comes from the caregiver and not so much the patient.

I can only summize that as a patient, we get to points to where "we just know."

But, from the Caregiver's side, I would imagine that you would want to hold out Hope against all else, even if their situation is a very dire one.

And I think that this must be nature's self-presarvation mechanism that acts as a shield to protect you from the thoughts of wondering What's Next? or What Happens Now? At least, untilit becomes apparent that you may have to do so at some point.

Life seems to be the hardest on those that are left standing after any tragic or traumatic event...the how do you go on? How do you heal? What's next? questions are some of the most arduous steps of the entire journey.

They always leave me hanging, because how do we comfort the caregivers, if the time comes? Every single caregiver story has broken my heart, because when a situation plays itself out, there are no ready answers, nor easily solutions.

It's the part of the disease that I can't stand...

So, no, I don't think you are being selfish, you are being protective of yours and you are wanting the best for your spouse. That's love.

One of the keys in this life is to know when Hope Ends - and Acceptance Begins...

That's a path I was trying to find myself when I was wrapping up last year's fight...you wouldn't have known me, Donna....beat up bad and out of steam...looking for the bench, because I was done...

I've been through some other mess besides cancer this year. It has eaten up my good days that I worked so hard for, but I have had no choice but to work on it and try and get it behind me, though there is still much work to do.

I've been fortunate to be responsive to surgeries and treatments and that has certainly made a difference. I hope that this is another bump. We used to use the word "Rally" here back then, remember?

So, I'll remain hopeful that Brian will do that.

Go ahead and "Dare to Hope", Donna...it was really bad for me last year...I'll never forget the look on my surgeon's face, just seconds before surgery when he read that last CT...told me all I needed to know...it was a fight that could have gone either way.

For whatever reason, I did respond favorable to all the brutality presented to me...don't know how many more of those I could do in the future, but made it through that one...

So, yeah, 'dare.'

Anything is possible - until it isn't...

So, until we know...I say, keep hoping...

'Cause that's exactly what I'm going to do for an old and trusted friend like you, darlin'



-Craig

Sundanceh

Fight for my love said:

You are my true hero as
You are my true hero as always...I have more reasons to keep my head up living in a foreign country and being strong.Thank you,my big brother,you inspire everyone,you inspire my husband,and you inspire me.Once I think of you and many other dear friends on this board,I am not worried about little things in life and have more strengh to move on.Thank you.

It's Starting to Feel Like a Class Reunion:)
Hi FFML:)

What a coincidence to see you here today - so glad, of course:)

And since, I've been going down memory lane, let me pull up a memory of you...too many too count, of course...

But, the one that jumps into my head right away, was when I had sent out the post saying I had added James Taylor's, "You've Got a Friend"...out in my expressions page.

And you told me one evening, that you were just sitting on your couch (in your old apartment)listening to that song and having ice cream and just "feeling so happy."

You've always been very special to me...I knew one day, that you would move on and I accepted that...but that still didn't mean that I stopped caring or didn't wonder about the both of you - because I have.

I think back to the Christmas card you sent me that one year...I never had a Chinese card before, it was very special. I still have it kept for all time in a box of memories from people on this board...and as you can tell, it is kept close to my heart still.

I'm so glad you and your husband are doing well...I remember all too well how frightened you were when you first started too...there were so many cases then...

I can't tell you how meaningful it is to see you once again...thank you for continuing to check in on the boards...the room is a little dimmer now, as alot of bright lights have been blown out.

Seeing you and Donna in back to back posts, brings back some very fond memories for me...

You stay in touch! Hearing from old friends has helped me today...it would take too long to explain...but just know that you made a difference today by reaching out and coming here and talking to me.

I'm so glad that in a world of constant change - that some things don't change.

Continued best!

Love/Craig

BTW, while you're on the line...check out this link when you've got 12 minutes to sit down. I'll just let the video do the talking...you will get it:)

http://www.youtube.com/watch?v=FwCSgS3hc4Q

Kathryn_in_MN

Glad you were proactive
My complaints of severe shoulder pain, and clavicle pain were written off as old port scar tissue issues, and something to be taken care of by chiropractic or orthopedic.

Nothing showed on a CT last March. Nothing showed on chiropractic Xray in June. But lymph mets and bone mets often don't show on CT or Xray unless they are huge.

My PET/CT did show the cause of my pain, including the pain in my back which I was assuming was tied to my usual back problems + adding in doing things awkwardly due to my shoulder pain and continuing drop in mobility. Bone mets - to shoulder, clavicle and spine (plus lots of new lymph mets in many areas).

It is important for anyone who has survived CRC for more than a couple years to take every new pain seriously and demand it be checked out.

I'm thrilled that your scan was clear! Congrats!