Fustrated and Confused

tachilders said:

My oncologist said that no
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

Sundanceh said:

Understandable
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...

Sundanceh said:

It Makes Perfect Sense to Me:)
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

barbebarb said:

I get it too!
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!

danker said:

Donna
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!!

leazer21 said:

Be confused and frustrated
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.