CSN Login
Members Online: 13

Fustrated and Confused

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

While I know my scan results may not seem bad I am not happy with them ..
They told me no change in the scan results from March to November. Devistating me..
Wondering why I am on this chemo.. Dr says same is better than growth.. and you don't know if you hadn't medicated if it had grown... my cea that always sat at 2 is now considered undectable. So where is it I stand right now..

So now I want to know how often do you biopsy the lungs as that is where my mets are... ???
I had a biopsy done last April.. should I be asking for another????

I am presently on a Chemo break.. but doc definitley thinks I should start back up in the next month or two... I am still taking the Vectibix while off chemo.

I am not second guessing my decision to go after a more radicql medical approach.. I am angry my body is not showing any difference.. come onn....... I have been torturing myself for a year almost 2 and no change.... ???? how can that be.. Fustrated and Confused...

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

My oncologist said that no progression/growth and/or tumor shrinkage is considered a treatment success, so that's probably what your onc thinks as well. I'm afraid not all of us, myself included, will get to NED status, so all we can hope for is that the chemo keeps us from progressing. I do know that prior to starting chemo, I had to have surgery (colostomy) and couldn't start chemo for 4-6 weeks. In that time, I had measurable tumor growth. After 5 tx of FOLFOX plus 3 with Avastin, I had no new tumors, no growth in any tumors, and shrinkage in some. Second set of CT scans is in January, so we'll see if I am stable, better (more shrinkage), or progressing (hoping for better or at least stable).

Tedd

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

you are correct tedd.. I just want to be one of the NED people..
I guess this is why I am fustrated.. Onc called me last week when first radioligist read the scan and said some nodes appear to be in Nacratic(dead) state.. and now when it was read again there was no mention of that... what is going on..
I am just so upset.. and even a white christmas won't make me happy I think...
I really thought Chemo would be the one thing I would succeed at.. so sadd....

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

That you feel this way, Donna...who wouldn't?

I get my angriest when my body fails me and doesn't do what I need it to.

Chemo is not a panacea for cancer...I've heard my onc(s) all tell me over the years...chemo will not cure cancer...and it won't...not in and of itself.

Even a 3-headed approach (surgery/radiation/chemo) can still lead us down the path of recurrence...I should know having done all of those each of the 3x I've had cancer in 8 or so years.

NED sets us some very unrealistic expectations...made even more so by folks bandying the term around loosely...which at times, can really lead to false hope.

What is NED?

Technically, one has to go for 5-years with "All Clear" scans the entire time - you are then pronounced medical NED. That's why it's so very difficult to attain...and that's what makes it so significant when one does achieve that status.

But, it's still no guarantee...when folks get a year or two clear...they use this word all the time...I've always preferred Watching and Waiting...lately I've been using Remissive State.

I mostly see "NED Breaks" as temporary from watching myself and watching others...history up here has shown this to be more the norm than not. Some of us will eventually be cured...and go even over 5-years clear...but look what happened to Steved...did his initial stuff....went 7-years clear...and then relapsed.

That was the biggest eye-opener EVER for me...

The WHY treatments work for some and not for others...is the biggest mystery of cancer.

It's the reason we'll never see The Cure...at least, not in the way that we expect it to be - which is a "blanket" cure that works for everyone.

Because of that, and with all of the hyperbole, the reason a cure or long term success is so very hard to attain...is that it always boils down to the one same ol' tired line that we retread every day up here...

"Because, we are all different..."

I don't know how we get around that.

I wish you some success...holding your ground is a victory over growth...that much is certain.

However, it does not take the pain away from what your expectations were for what you have been going through...you have every right to feel the way that you do.

And I think that is really what you are saying - underneath the anger...

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Thanks for clearing up what NED means... I will think twice when I read that next time.

I am angry.. aren't we all angry.. I mean I try to live peacably but this is really tearing at my senses..
I think of all the things I had plans for.. this was supposed to be my year and now it didn't happen that way at all.. I had planned to get my life back before seeing stage 4 and finding someone to see me thru it.. but that didn't happen when this happened.. infact is scared off a really get candidate I had lined up. He freaked when I freaked and fell apart so here I am... alone.. and hating it all and all it means and these results just make me feel worse.. I know this sound probably stupid but when you lead a lonely live and set you mind to make this the year the loneliness ends and then it all falls apart you just want to crumble.. but I can't crumble .. no one is here vacuum up the crumbs but me and God knows I hate the vacuum.
It scares me to go thru this alone... when I had my initial surgery and it blew up with infections and they sent me to rehab after a month in the hospital and it was the worst and saddest experience of my life to see the people who conldn't help themselves or ask for what they needed and there i was crying and thankful I had a voice to get the hell out of there within 16 hrs --- they didn't even know how to make the IV work that I need for antibiotics. I was sure they would figure out how to make it work and kill me during the night by giving me the wrong drugs..
Sorry if I am rambling.. but I really can't talk to anyone personally.. I am the strong one.. they cry at a hangnail or gray hair.. Me I have been thru the war and everyone expects me to keep it together and I do a pretty good job of that when they are around. I have lost both my parents(dad when I was 6, mom when I was 25), one horrible relationship after another.. looking for the man my mom described my dad to be and then aa horrible breakup from a man I lived with for 10+yrs.. then thyroid cancer, than rectal cancer, mets in lungs.. come one.. I am not a cat.. I don't have 9 lives..
Then do you believe in coincidence... when I had a dream about 2 weeks ago of a man who used to work for me i called POPS he has to be in his 80s now.. and who walks into the LabCorp while I am waiting.. i had been worrying about him during the Hurricanes Irene and Sandy but I was too ill to check in on him and his sick wife as I knew I couldn't hide my cancers from them and they had enough to deal with.. It was feeling like I was bumping into him to say Goodbye.. I don't know why I am not going anywhere . my doc swears there is more torture left here for me to endure..
Well if you have read this far you are alot stronger than me.. Does anyof this make any sense?
Thanks..

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

And I stayed with you the whole way...I'm The Lion - not the cowardly lion:)

Donna, I can touch on some points about having to fight alone...first, you are physically alone...and that does make a huge difference...as you indicated...you either "do" or you don't get...and that's a very heavy burden to carry.

It pains me to the bone to hear you cry out - but I do hear you this morning...truly I do.

I can only offer that even having a spouse in the house with you can still be "Lonely."

You may ask, "How could that be?"

But, being there in the physical sense does not always equate to what we really need or require in the emotional sense of things.

You can be sitting right next to one another...just a couple of feet apart...and each of you be miles away from one another in your minds...and in your hearts.

That can almost be more devastating...we've been through that...I honestly don't know which is worse.

Still, the physical plays a role in the fact that when you need help, you've got that option physically available.

I'm sorry about your parents...I never knew love from either of my parents...they were horrible people.

And so, I'd also offer up this dichotomy, using myself as the example...

In my dad's last days...my aunt went behind my back and got hold of my 1/2 brother...one of dad's first sons from his first marriage...I have not seen him in 34 years...I had only met him one other time in my life...tried to contact me...wanted nothing to do with me.

So, I was miffed that she had him there...of course, he was still angry and bitter towards dad...because dad abandoned them when they were young...went off to start another family he did not want...and I was the visible reminder to my 1/2 brother that my dad had traded him in for me.

I never got to tell him how he traded in me and my sister in like an old used Rambler for the next ex, the one I'm having to deal with now.

I told him the same thing...I know it hurt you, but maybe you got the better end of the stick...he left you - yes...he wanted nothing further to do with you - yes.

But, at least you were rid of him...and your step dad loved you and my other 1/2 brother (died of a heart attack) very much and gave you a good life...

Dad, on the other hand, punished and berated me every opportunity he got for 51 years...look at it that way, bro.

Who really knows - both lives were destroyed...

I guess the point I'm making is that it's not so much about having a physical presence in your lives...sometimes they can only clutter up our surroundings...any meaningful, real relationship, no matter how brief, are the ones that we hold close to our hearts...and whose memories we will cherish forever.

I never got to drink out of the same fountain that you did...you know love...from both parents...I never knew love...from either...except my dearly departed sister, whom I miss still so much.

It's all just a matter of perspective, isn't it, Donna?

Which is why I needed to talk with you again this morning...you have it rough...and yeah, you get to be the strong one...which you are.

You know what it really is, Donna?

And this is free, just for you this morning:)

There is a part of you that wants "the permission" to break down right about now - and just let someone else take the wheel and drive for awhile. Or, just let someone nurture you through this spell.

Basically, I think you just want to let go...I know I do right now...I want someone to help me make this problem go away...and yet I can't...I have to be...and I have to do...and that's all there is...and all there ever will be.

That Sundance feller - everybody's watching him:)

I get nurture too...because I never got nurture...some of my honey mamas here have been good at soothing this savage beast...but I understand how hard it is to "Be Hard" all the time.

To set the bar even higher...to keep up apparences...to live up to an image that is impossible to maintain 24/7....yeah, you're right on with what you feel.

I've burned up about 5 or 6 lives myself so far walking in my shoes, Donna:)

If we do get 9, that means we still get more chances.

And for torture and endurance...you know my cancer story...some of my life story...lots of both of those elements laced through and through.

We don't get out of this life unscarred, Donna...to live is Pain...and always keep in mind that Personal Growth comes directly from Pain, Sorrow, Trial and Tribulation.

It always hurts to grow...it hurts to live sometimes too...

So, here's what we gotta' do..."ADAPT and OVERCOME."

Sending you a holiday hug for better tomorrows...we'll get there:)

-Craig

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I think you are tryng to tell me we all have crosses...
My mom used to have hundreds of saying that I thought were dump or hokey when I was younger...
Like:
God gives crosses to those he knows can bare them..
You won't know you are alive if you have no pain...
Misery loves company...
Into each life some rain must fall...

Well the next time God is looking to drop a cross off.. I am turning off the light and hiding in the closet..

I know everyone has crazies in their families.. I have a few myself.

I have read your posts Craig so Yes I know your story and I am sorry you had such a bad expeience with parents.

I know the manta. Breath, Relax, Refresh...

and Yes.. I want someone to take the wheel for awhile.. I don't mind driving.. but I need to rest.. even God rested on the seventh day...

Thanks for sharing and listening to me Craig... <> Donna

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Duonna -
I totally understand what you feel.
I only have my mother (she is really checked out and a cold fish) and two twenty something kids that live with me.
My friends helped me and after two surgeries, and chemo I only had 3 months of NED! I feel all of what I endured kind of failed me.
Next week I will get new treatment plan?. Its all so much isn't it?
Those sayings are cliches.
It is very hard to get thru this alone. Tomorrow I head to a pulmonologist that is doing lung procedures via broncoscopy at UIC in Chicago - by myself .
I just want to give you a hug!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Thanks Barb..
<> to you too..
I will pray for your success.. good luck in Chicago.. keep my posted on what he will do..
my doc had talked to me about 6 months ago about doing RFA.. but since there is no changes that probably won't happen.. eventually they will want to resection and I don't know if I like the sound of that.. I will have to learn more about the lungs than I know presently to feel comfortable with that..

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I am praying for you too.
The only "thing " I know is possibly options....I am still very scared and I don't think surgery on the lung module will be an option. However, it's the waiting and all of our center of emotional energy that twists us and challenges us to seek resolve with our current health condition. It's overwhelming.
I am going to cancel my appointment at UIC since I don't have my Pet Scan results. I am to meet at 3p today.
I am so happy to be back at work and fear treatment and trying to get thru the days. Just need to take it hour by hour for now.....
Do you walk or exercise? I do find it helps me get my spirits together.
This is an even more challenging time of the year.
I will be posting once I know the next plan Donna.
Thank you for your kind post.
We all deserve lighter crosses to bear.....

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

...not now...the plans have changed:)

Because, there will be a little part of me "there" with you, Barb.

One of the things that hurts my heart the most is that distance separates the possibility of our physical presence with one another...there are those times when we would just be delirious to have someone to sit with in the waiting room...or even the consultation room itself.

I know I have often longed to have the means and/or ability to want to just show up for somebody who does not have a good support group. There was a time when I first joined here...this lady was new to the country...had just recently married...and her hubby was dx'd.

On the day of his surgery, she sat in the waiting room alone...it was heartbreaking...I often wondered how much of a difference it would have made for me to just be sitting there talking with her...you know?

Because, there are times when we just need that...cancer is an isolating disease...it attacks us from many angles...always the way to break us is to break our minds - break our spirits.

Cancer looks for openings like this and that's how he spreads...

But, this board has taught me that while we may be physically alone...if we open that door to our heart, we find that our friends are indeed right there with us...I can't tell how you many times in the waiting room and in infusion, or the radiation chamber, where my thoughts all centered around folks like you...and what I wanted to say to them...and the thoughts that and feelings I had about and for them...it was this safe, little world inside my head, where I carried all of us with me into my own battle...and yours too.

I understand Loneliness...I understand Betrayal...I understand Apathy...I understand many things...

But, you won't really be alone...not if you don't want to be...just save a corner of your heart for me...call my name...and I'll be there:)

Good luck Barb...and you too, Donna:)

Hang in there, ladies...the oldest cliche of 'em all, eh gals?

-Craig

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

When you're down and troubled
And you need a helping hand
And nothing, nothing is going right
Close your eyes and think of me
And soon I will be there
To brighten up even your darkest night

You just call out my name
And you know wherever I am
I'll come running to see you again
Winter, spring, summer or fall
All you have to do is call
And I'll be there, yeah, yeah, yeah.
You've got a friend

If the sky above you
Should turn dark and full of clouds
And that old north wind should begin to blow
Keep your head together
And call my name out loud, yeah
Soon I'll be knocking upon your door

You just call out my name
And you know wherever I am
I'll come running, oh yes I will
To see you again
Winter, spring, summer or fall
All you have to do is call
And I'll be there, yeah, yeah, yeah.

Ain't it good to know that you've got a friend
When people can be so cold
They'll hurt you, and desert you
And take your soul if you let them
Oh yeah, but don't you let them

You just call out my name
And you know wherever I am
I'll come running to see you again
Winter, spring, summer or fall
All you have to do is call
And I'll be there, yes I will.

You've got a friend
You just call out my name
And you know wherever I am
I'll come running to see you again (oh baby don't you know)
Winter, spring, summer or fall
All you have to do is call
Lord, I'll be there yes I will.
You've got a friend

Oh, you've got a friend.
Ain't it good to know you've got a friend.
Ain't it good to know you've got a friend.
You've got a friend.

danker
Posts: 765
Joined: Apr 2012

One of my brothers used to say," If we all had to put our troubles in a barrel, and then pick one out. Pray you get your own back- you know how to deal with that one." How true how true!!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

So TRue!
You and your brother are correct..
You never know what others have going on that you don't see..
Hope you are well Dan.. haven't heard from you here lately..
Donna

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Craig-
Your posts means so much to me.
You are able to understand and put the dark side of cancer in a
hopeful existence.
Many of the examples you mentioned I have experienced and felt, too.
It is difficult to be your own cheerleader
when you are let down from a scan, chemo, etc. Or in my case having my mother say I could have gotten the same care locally and just make small payments every month and you will get your bills paid.. I just wish she had it in her to hug my kids and let them know she's there for them, but not so. You do find out who your real supporters are on this journey and for me its not family. That is the reality... :-(
Sometimes I have to back off from my support group and turn to this board for support!
You "guys" (as we say in Chicago) are such warm and understanding friens. Its unfortunate we had to meet because of this disease but an honor.
Donna and Dan, thank you for your posts, too.
My daughter said to me, "Mom, if you put all your troubles in a bowl you would want to keep your own." She gave examples and made me laugh. Somewhat true.....
Barb

leazer21
Posts: 4
Joined: Dec 2012

Be confused and frustrated does not help anybody. Try to calm down and think that the mass didn't grow. Fighting cancer is probably your hardest battle of your life. Just be patience and you 'll see everything is gonna be okay and you will be absolutely healthy again as before for you and your family.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Never deny anyone their feelings.. I don't know who you are Lea as you have no profile and you just recently joined us.. We support each other here and don't deminish anyones feeling. We have every right to feel as we do..
So till you are ready to tell your story I kindly ask you refrain from giv**** me any advise.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I agree...
We do have every right to feel as we do.

Barb

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network