reality has hit and i am numb

johnnybegood

hello cyber family.its been 5 weeks since my liver resection.my energy is coming back but my side hurts under my rib,i expect that will be sore for a while.meanwhile i had a cat scan on sept.29 and met with the chemo onc to discuss further treatments.for the 3 nodules on my right lung.as we were discussing things he said all nodules on both lungs have grown in size since being off chemo(last chemo treatment was july25)i said i thought i only had it on my right lung.he then went over the cat scan with me and it did state right lobe and left lobe which according to him is right lung and left lung.so i requested a copy of the cat scan that was done on july 20.i could not read the darn thing but it looked to me it says something about 1 nodule in the left lobe which i was never told about.i talked to my surgens nurse yesterday and he(the surgen) agrees with the chemo onc on the plan of action.since i have been off chemo since july i still have the 3 nodules on my right lung and now have 3 nodules on my left lung.i dont know how some of you can stay so strong and positive.is this what stage 4 is all about.i feel as if i am just living so i can die a slow death.is that all we are supposed to do is take our chemo to keep it from spreading so we can prolong our agony as we watch our loved ones that stand by our side who are just as helpless as we are against this disease.i know there are sugeries that can be done on the lungs.but as it was explained to me by the chemo onc.sometimes surgens dont like to cut us open and cherry pick those cancer spots out and put the patient thru more surgeries because more likely the cancer will come back.i tend to agree with him.i mean i have only been off chemo 2 months and it has spread fast and i still have to wait 3 more weeks for my body to heal from the liver resection.i will be taking avastin and that is why we still have to wait.please help me to stay strong i feel so scared and alone.thanks for letting me vent i just need a lot of shoulders to cry and lean on....Godbless....johnnybegood

Annabelle41415

Sorry
I'm so sorry you didn't get better news. Are they just wanting to see if the chemo will shrink the tumors and wait. Do you want a second opinion? You will be in extra prayers from me for things to go well.

Kim

pepebcn

Have my shoulder my friend!
And hang in there , just look Phil , he is living a comfortable life and every certain time he has a harvest of his nodes! , Actually I'm trying to convince to my docs to follow his strategy in case next scans show something wrong!.
Cheer up my friend , we love you!.

johnnybegood

Annabelle41415 said:

Sorry
I'm so sorry you didn't get better news. Are they just wanting to see if the chemo will shrink the tumors and wait. Do you want a second opinion? You will be in extra prayers from me for things to go well.

Kim

yes kim
that is the plan.we will get the big guns out as the onc put it.first couple of treatments of irritatecan+avastin to knock them down to a smaller size then go to xeloda+avastin.please let us know about your scans...Godbless....johnnybegood

johnnybegood

pepebcn said:

Have my shoulder my friend!
And hang in there , just look Phil , he is living a comfortable life and every certain time he has a harvest of his nodes! , Actually I'm trying to convince to my docs to follow his strategy in case next scans show something wrong!.
Cheer up my friend , we love you!.

oh pepe
thank you so much for the shoulder.yes phil is a tough one and there are many tough ones in our cyber family if only i could be more like them.i have had many people tell me i am a tough lady but what they dont know is i may look tough on the outside but i am falling apart on the inside.thanks my friend and love you back....Godbless....johnnybegood

maglets

johnnybegood said:

oh pepe
thank you so much for the shoulder.yes phil is a tough one and there are many tough ones in our cyber family if only i could be more like them.i have had many people tell me i am a tough lady but what they dont know is i may look tough on the outside but i am falling apart on the inside.thanks my friend and love you back....Godbless....johnnybegood

johnny
NO ONE IS TOUGHER than you are! if we appear tough....still jelly on the inside...

i wish you could have come through liver without the lungs....but so be it....another path johnny...you know this first shock will ease and you can go on

johnny I need your help...scans for me tomorrow wednesday....please hold my hand my dear friend

love always.....maggie

johnnybegood

maglets said:

johnny
NO ONE IS TOUGHER than you are! if we appear tough....still jelly on the inside...

i wish you could have come through liver without the lungs....but so be it....another path johnny...you know this first shock will ease and you can go on

johnny I need your help...scans for me tomorrow wednesday....please hold my hand my dear friend

love always.....maggie

mags
you know i will hold your hand and you will be in my thoughts and prayers.yes i know this to shall pass but this one seems to be taking longer to pass than any other time.i just keep thinking how fast this crap can move.with only 2 short months of being off chemo it has jumped over into my other lung,that just terrifies me.i hold you in my heart for tomorrow all will be well....Godbless....johnnybegood

pepebcn

maglets said:

johnny
NO ONE IS TOUGHER than you are! if we appear tough....still jelly on the inside...

i wish you could have come through liver without the lungs....but so be it....another path johnny...you know this first shock will ease and you can go on

johnny I need your help...scans for me tomorrow wednesday....please hold my hand my dear friend

love always.....maggie

Praying for you as well Mags !
you Got my hand and my love as well!
Hugs to both !

Sundanceh

Hitch Your Trailer to My Bumper....
...and we'll ride through the darkest valleys of your cancer journey, J:)

I remember when they told me I had a spot in my left lung, when I was fighting so hard to get rid of it in my right one. It was alot to think about, and all I could think about was to just work on the one lung and I'd get to the other.

I can't prove what happened, but it disappeared in the left lung when I was on the Folfiri. It may have been something else, but me and the docs decided to work one and deal with the other and then we saw it disappear between scan cycles.

All of your thoughts speak to me in volumes with the questions you are asking yourself on "if you want to continue or not?" I'm right in the middle of writing this chapter, J, and when I hear from folks like you, it really makes my heart heavier because I realize that I'm talking about what's happening to real friends of mine and not a person I've never met. It makes it all the realer to me.

First, I know we say 'you are never alone.' But, I write that at times that we really are when we cross those invisible lines into the O/R's, radiation chambers and chemo rooms to do our procedures. We are alone then, but comforted from the fact that we are not alone when we think of the many here who have done, are doing, and will do again, those things that you find yourself doing now.

The hardest times are in treatment...that's where we feel the isolation. I spent 10-months solo this past year in the house - I'm good at it, but still nearly went out of my mind. The seeds of growth are planted during this time and harvested at a later date when the crop finally comes in and you can see how you got through all of that one more time.

I urge you to stay in there - mama is all over you with love - and you've got so many folks here who are with you. We know you are in pain - I feel you screaming it right now - and it sounds good to me - get it out there - I am woman, hear me roar.

You do have a strength that has not even been fully realized yet - you are wavering and bending, but then again, so do the strong old oak trees. The key is to snap and break - and you won't.

Hang in there with me, let's fight on some more, darlin' - there is always time to raise the white flag, but somehow I just don't feel we're at that juncture.

I see myself when I hear you today. You've come to that point of your latest fight where you are experiencing self-doubt and have reservations if you still have what it takes to fight on. I can assure you, that you have all of that in more.

There were 2 points where I had seriously contemplated finally letting go, but then I thought again, and did not want to give up that which I had already fought for and gained. If I gave that back, then I would be in a far worse predicament.

I've talked to Big Billy (ask Mama about BB) and he tells me that still further down in you, is JBG's 'big billy'.....it could be those fine stallions. Find that quiet resolve and strength to regain your composure and get your 3rd wind and blow through this storm you find yourself in.

It's all very understanable, J, I so get the things you are saying today. Why I can't make those go away, I will continue to stand with you:)

-Craig

maglets

Sundanceh said:

Hitch Your Trailer to My Bumper....
...and we'll ride through the darkest valleys of your cancer journey, J:)

I remember when they told me I had a spot in my left lung, when I was fighting so hard to get rid of it in my right one. It was alot to think about, and all I could think about was to just work on the one lung and I'd get to the other.

I can't prove what happened, but it disappeared in the left lung when I was on the Folfiri. It may have been something else, but me and the docs decided to work one and deal with the other and then we saw it disappear between scan cycles.

All of your thoughts speak to me in volumes with the questions you are asking yourself on "if you want to continue or not?" I'm right in the middle of writing this chapter, J, and when I hear from folks like you, it really makes my heart heavier because I realize that I'm talking about what's happening to real friends of mine and not a person I've never met. It makes it all the realer to me.

First, I know we say 'you are never alone.' But, I write that at times that we really are when we cross those invisible lines into the O/R's, radiation chambers and chemo rooms to do our procedures. We are alone then, but comforted from the fact that we are not alone when we think of the many here who have done, are doing, and will do again, those things that you find yourself doing now.

The hardest times are in treatment...that's where we feel the isolation. I spent 10-months solo this past year in the house - I'm good at it, but still nearly went out of my mind. The seeds of growth are planted during this time and harvested at a later date when the crop finally comes in and you can see how you got through all of that one more time.

I urge you to stay in there - mama is all over you with love - and you've got so many folks here who are with you. We know you are in pain - I feel you screaming it right now - and it sounds good to me - get it out there - I am woman, hear me roar.

You do have a strength that has not even been fully realized yet - you are wavering and bending, but then again, so do the strong old oak trees. The key is to snap and break - and you won't.

Hang in there with me, let's fight on some more, darlin' - there is always time to raise the white flag, but somehow I just don't feel we're at that juncture.

I see myself when I hear you today. You've come to that point of your latest fight where you are experiencing self-doubt and have reservations if you still have what it takes to fight on. I can assure you, that you have all of that in more.

There were 2 points where I had seriously contemplated finally letting go, but then I thought again, and did not want to give up that which I had already fought for and gained. If I gave that back, then I would be in a far worse predicament.

I've talked to Big Billy (ask Mama about BB) and he tells me that still further down in you, is JBG's 'big billy'.....it could be those fine stallions. Find that quiet resolve and strength to regain your composure and get your 3rd wind and blow through this storm you find yourself in.

It's all very understanable, J, I so get the things you are saying today. Why I can't make those go away, I will continue to stand with you:)

-Craig

thank you
thank you Johnny....that is very generous of you...and thank you too pepe....

Craig wonderful reply....sorry sorry sorry Johnny....really don't mean to crowd your thread

holding you in my heart Johnny.....maggie

johnnybegood

Sundanceh said:

Hitch Your Trailer to My Bumper....
...and we'll ride through the darkest valleys of your cancer journey, J:)

I remember when they told me I had a spot in my left lung, when I was fighting so hard to get rid of it in my right one. It was alot to think about, and all I could think about was to just work on the one lung and I'd get to the other.

I can't prove what happened, but it disappeared in the left lung when I was on the Folfiri. It may have been something else, but me and the docs decided to work one and deal with the other and then we saw it disappear between scan cycles.

All of your thoughts speak to me in volumes with the questions you are asking yourself on "if you want to continue or not?" I'm right in the middle of writing this chapter, J, and when I hear from folks like you, it really makes my heart heavier because I realize that I'm talking about what's happening to real friends of mine and not a person I've never met. It makes it all the realer to me.

First, I know we say 'you are never alone.' But, I write that at times that we really are when we cross those invisible lines into the O/R's, radiation chambers and chemo rooms to do our procedures. We are alone then, but comforted from the fact that we are not alone when we think of the many here who have done, are doing, and will do again, those things that you find yourself doing now.

The hardest times are in treatment...that's where we feel the isolation. I spent 10-months solo this past year in the house - I'm good at it, but still nearly went out of my mind. The seeds of growth are planted during this time and harvested at a later date when the crop finally comes in and you can see how you got through all of that one more time.

I urge you to stay in there - mama is all over you with love - and you've got so many folks here who are with you. We know you are in pain - I feel you screaming it right now - and it sounds good to me - get it out there - I am woman, hear me roar.

You do have a strength that has not even been fully realized yet - you are wavering and bending, but then again, so do the strong old oak trees. The key is to snap and break - and you won't.

Hang in there with me, let's fight on some more, darlin' - there is always time to raise the white flag, but somehow I just don't feel we're at that juncture.

I see myself when I hear you today. You've come to that point of your latest fight where you are experiencing self-doubt and have reservations if you still have what it takes to fight on. I can assure you, that you have all of that in more.

There were 2 points where I had seriously contemplated finally letting go, but then I thought again, and did not want to give up that which I had already fought for and gained. If I gave that back, then I would be in a far worse predicament.

I've talked to Big Billy (ask Mama about BB) and he tells me that still further down in you, is JBG's 'big billy'.....it could be those fine stallions. Find that quiet resolve and strength to regain your composure and get your 3rd wind and blow through this storm you find yourself in.

It's all very understanable, J, I so get the things you are saying today. Why I can't make those go away, I will continue to stand with you:)

-Craig

Craig and BB
thank you so much for your words.as i sit and read your reply i just sit and cry and cry because you know exactly how i am feeling.the reason is because you have been there and done that.i am so sorry you had to go thru these things but at least there are people like you who can help people like me thru our journey.you are right on with everything you say.this is truly the only place i can turn to because its people like you who understand my fears,my anger and all the emotions in between.thanks for standing with me in this fight it really means a lot to me...Godbless....johnnybegood

dorookie

Praying
for you to have strength, for some peace, and for this horrible beast to go away...its not hard, and all you are feeling is very normal, many of us have been there, and many of us are still here today to tell you, you can get through this too....stay strong and know we are here for you...

HUGS
BEth

jjaj133

Johnny, i am praying for you
Johnny, i am praying for you and Maggie. It's a hard road we all travel. But we all seem to keep on going, through good and bad/ So hang in there. We are lined up, shoulder to shoulder, sending prayers and positive vibes.
God Bless,
Judy

wolfen

jjaj133 said:

Johnny, i am praying for you
Johnny, i am praying for you and Maggie. It's a hard road we all travel. But we all seem to keep on going, through good and bad/ So hang in there. We are lined up, shoulder to shoulder, sending prayers and positive vibes.
God Bless,
Judy

My Darling Daughter
When we talk, I can't start crying because I would never stop. I try to stay sane and strong through it all, so I can encourage you, fill you with hope, and suggest anything I can think of to control and rid you of this horrible beast.

I cannot comprehend the physical pain you and others are going through, only the mental anguish and feeling of complete helplessness. Words can't describe how it feels for me to know that I can't fix this for you, nor be there to hold you in my arms. I am so glad that you have many friends here to help you pull through this. Craig said it all so well. You will find the strength to keep on fighting.

You are the first person I think of each morning and the last each night. Even though I am not religious, I ask God each night to please take care of you.

We love you so much.

Love,

Wolfen(Mom)

johnnybegood

dorookie said:

Praying
for you to have strength, for some peace, and for this horrible beast to go away...its not hard, and all you are feeling is very normal, many of us have been there, and many of us are still here today to tell you, you can get through this too....stay strong and know we are here for you...

HUGS
BEth

Beth and Judy thank you
so much for your support.when it all sinks in and i start back on chemo hopefully i will be back in fight mode...Godbless....johnnybegood

lizzydavis

wolfen said:

My Darling Daughter
When we talk, I can't start crying because I would never stop. I try to stay sane and strong through it all, so I can encourage you, fill you with hope, and suggest anything I can think of to control and rid you of this horrible beast.

I cannot comprehend the physical pain you and others are going through, only the mental anguish and feeling of complete helplessness. Words can't describe how it feels for me to know that I can't fix this for you, nor be there to hold you in my arms. I am so glad that you have many friends here to help you pull through this. Craig said it all so well. You will find the strength to keep on fighting.

You are the first person I think of each morning and the last each night. Even though I am not religious, I ask God each night to please take care of you.

We love you so much.

Love,

Wolfen(Mom)

Just wanted you to know that
Just wanted you to know that I care too. I am holding you high in my thoughts and prayers.

Lizzy

johnnybegood

wolfen said:

My Darling Daughter
When we talk, I can't start crying because I would never stop. I try to stay sane and strong through it all, so I can encourage you, fill you with hope, and suggest anything I can think of to control and rid you of this horrible beast.

I cannot comprehend the physical pain you and others are going through, only the mental anguish and feeling of complete helplessness. Words can't describe how it feels for me to know that I can't fix this for you, nor be there to hold you in my arms. I am so glad that you have many friends here to help you pull through this. Craig said it all so well. You will find the strength to keep on fighting.

You are the first person I think of each morning and the last each night. Even though I am not religious, I ask God each night to please take care of you.

We love you so much.

Love,

Wolfen(Mom)

my dearest mother(wolfen)
thank you for staying strong for me and for finding this site for me back when i was first dx in 2008.we cant always be strong but there is always someone on here who can make us stronger.Love you so much too....Johnnybegood(your daughter)

plh4gail

Ohhh....Dear johnnybegood,
Ohhh....Dear johnnybegood, I'm trying to think where to begin writing my thoughts. From my heart I want to say that day to day struggles and accomplishments is what we are here for, to show our loved ones how to truck on down each path, (not just cancer's path) whether it be smooth sailing or bumps in the roads. It gives everyone (us and them) some form of guidance, knowledge, love, support, strength....to keep on going. ......and then there is my brain saying "why" am I doing this to everyone. Well I am not stage 4, but I am still a cancer survivor 3C and my next staging (knock on wood) is 4. I think the reason I have to keep going strong and positive in front of my family is just that ....for them. They are not ready to lose their loved one yet. And that is you right now! Not your time sweetheart! As others have said to me, you will have your down times and it's ok. Then you will get back up and be ready to go get'em again. And you will have soo much love and support to help hold you up!!

Love, Gail

idlehunters

johnnybegood said:

my dearest mother(wolfen)
thank you for staying strong for me and for finding this site for me back when i was first dx in 2008.we cant always be strong but there is always someone on here who can make us stronger.Love you so much too....Johnnybegood(your daughter)

OK...you guys got me in tears.....
This talkin between mother and daughter really tugs at my heart.... in a good warm way. I soooo feel the love beween the two of you.

JBG...... Sometimes I feel the same way.... how can we not? IT WILL GET BETTER.... IT WILL. You are such a fighter girl.... you look cancer in the face...and say "Bring it" ... and you win all the battles..... when the war is over...YOU will stand tall...not cancer. Love to you girlfriend.

Wolfen.... you are just an awesome MOM and FRIEND...you rock!

Jennie

mom_2_3

JBG
Everyone else here has already offered you some wonderful advice and words of strength. There really isn't anything else I can add to them. I can only tell you that I keep you in my thoughts and prayers.

Amy

steveandnat

Think positive thoughts and prayers
This journey is really crazy with all the twists and turns we have to go through. We have to stay strong which is really hard because of all the unknowns. I went to the onc today for treatment but couldn't get it because of counts being too low. That raises the stress levels because we don't know what to expect. Getting scans tomorow morning..another worry. Wow it seems to never end BUT on those good days you have to treasure them and pray there will be more to come. Hang in there, I'll be praying for you and the best to come.
Jeff