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reality has hit and i am numb

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

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

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Your friends and family love you. Even in cyber space.
So what's any of us doing to do ?
Simple answer is just our best.
So love your family as well as you can, I guess that means loving yourself and caring for yourself.
You raised questions you alone can answer, that said the questions themselves show how thoughtful you are.
As for treatment I'll let stage4s here advise. a super healthy diet , exercise and some supplements may help. It's where my focus is. I pray the nodes shrink. I took tissue regenex and cologenpro, these supplement helped me heal fast, of course gut relief powder, probiotics , digestive enzymes helped as well. Just mentioning what I found helpful.
Everyday is a gift, I am determined to minimise the footprint crc has on my life.
I hope tomorrow finds you feeling well.
Hugs,
Pete

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

...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's picture
maglets
Posts: 2596
Joined: Jun 2006

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's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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
Posts: 1736
Joined: Jul 2007

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

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

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's picture
wolfen
Posts: 1330
Joined: Apr 2009

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)

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

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

Lizzy

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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)

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Johnnybegood

I think what keeps me going is that I have accepted death. It's not a matter of if, it's a matter of when. I don't make long term decisions and feel that in doing that I am focused on today. I don't think about cancer Not my cancer every day. I think of fueling my body. I'm not scared nor do I think I have to remain quiet with my position. My sisters tell me to hush. But no, I may not be here. I know every dies soon ir later nut we stage 4s know that tomorrow nay be different then today. Stay strong, in other words don't be afraid. Just move forward If you don't you ate missing the luge you have. Live it! Hugs!!!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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

mom_2_3
Posts: 965
Joined: Nov 2008

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's picture
steveandnat
Posts: 887
Joined: Sep 2011

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

buckeye2
Posts: 428
Joined: Jul 2011

I haven't researched this much at all but read about it on another discussion board but it is called Proton therapy (http://www.procure.com/) for lung tumors. Mayo is opening a new clinic to do this procedure so it must have some validity. I will send prayers your way and hope for better days ahead for you. Lisa

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hi there, and a warm hug from San Diego....this is tough stuff.
Don't think about being strong or being brave or any other platitudes. Just do what the doctor says. One foot in front of the other....simply one foot in front of the other.
You CAN do this.
Your friend in California~

Erinb
Posts: 295
Joined: Apr 2010

That's how I feel sometimes and I am not even going through it-my husband is. Cancer sucks. Chemo could kill it and make you NED as it has for some on this board. You're healing from surgery right now. Focus on getting your body strong so you can kill those cancer mets!
Erin

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm sorry you are at a tough point in your journey right now. I understand. A lot of us do. I just started my first radiation treatment today to try and get rid of the stubborn cancerous lymph nodes I've been battling for two years. But while I do this, I can't be on chemo. I was on Avastin, which would cause too much trouble if I end up with radiation burns - they would not heal. I was on Irinotecan which gives me really bad early and late onset diarrhea. Because of the areas I am getting radiation, I run the risk of bad diarrhea from the radiation, so they do not want the double risk. So, I have the chance that if there are other areas with little cancer cells lurking that chemo has been keeping quiet, they could grow or spread during the next several weeks. I've been off chemo for two weeks and have at least 6 weeks of rad to do now, so I'll be off for at least 8 weeks. I'm hoping my CEA stays down and nothing new pops up, and I can finally have a true chemo AND treatment break. But I know I could be facing the same situation as you.

I have always been tough, but find myself breaking down a bit lately. I'm pretty sure it is just a phase. I think about just stopping treatments and letting nature take its course, instead of dragging my family through more financial messes and emotional pain. But my family does not want me to stop treatment yet. They want me to try and stay with them longer. Some days it is hard to really know what is the right thing to do.

Just know that when you have a rough time, others have been there before you, and others will come behind you. You aren't alone in this. Right now is a low point for you, but you'll get through it, and then you can be a help to the next one that comes along having troubles with a similar situation. I know I'll get through this down time, and will be back to try and help others too, once I have that strength again myself.

Hang in there. You ARE tough! You've been through a lot and have kept going, and you can continue that. Just give yourself a break and don't expect to be positive 24/7 or tough 24/7. Ups and downs are part of life, and we have them, and we deserve them, and no one can expect us to be strong and positive all the time.

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Oh, dear. I know this is a blow to you! You do have strength that you don't know about, and it will help you during this trial. I'm praying that your chemo will give you great results!

*hugs*
Gail

janderson1964
Posts: 2215
Joined: Oct 2011

Don't let it keep you down for long. I just found out about a possible reccurence in my liver for the third time and there is something behind my spleen. It never gets easier getting bad news. But a day later I am already recovering from the news and dusting off the old boxing gloves because this is going to be a brutal fight. You have plenty of hidden strength to fight this. we can all strengthen each other with our bonding.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

So, another little hitch in your get up and go. That's it, a hitch. It sucks, you just want to get up and go and everything be fine and dandy, and it's a hell of a note when it isn't. It sucks big time.
And yes you're tough on the outside and scared and falling apart on the inside, most of us are. Heck, I spent many a night crying all alone to myself (my husband was next to me but sound asleep)I tried to cry as silently as possible, at night my world came crumbling apart as I laid there thinking of all the possibilities and scenarios.
In the day time I was super woman, nothing will get me down, etc. The super woman facade was not only good for my family but for me as well, it forced me to think positive for myself and find every avenue I could to be here, to stay here, as well as for my family to remain positive.
The night were my grief time, grieving because this d@mn cancer was invading my body, grieving at life changing so much for me and my family, wondering what was going to happen, these times were my weak times, times when my fears stared at me in the face.
And girl, we're all allowed our weak moments, our moments of fear of the future and possible outcomes. Your strength will stay with you though.
And we're here for you, you know that, you've been here for how many of us already? Too many to count. So when your fears start to overwhelm you, put out a holler, we'll be here for you to lean on.
I think of you often and always pray for the best for you. It'll be alright.
Winter Marie

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

so much for you comments and support.i think of you often winter marie and dont know how you do it going to school and all.nana b i try to take one day at a time but the future still keeps popping in my head.i just dont want to leave my family with such a mess to clean up after im gone.the medical bills,my husband will lose our home the list goes on and on.a friend of mine told me the other day not to think about those things as your family will be ok,they will get thru it.she is right i just need to focus in the now.i just need to treat this cancer like a horse,you have got to let them know you are the boss and you are the one in control.thanks again everyone...Godbless....johnnybegood

Psalm 91
Posts: 5
Joined: Oct 2011

Didn't Lance Armstrong have testicular cancer that spread to his brain and his lungs? He has children and has won the Tours de France. I know that you are scared but look up. Anything is possible with "The Great Physician" on your side. You mention Him in each of your posts. If you start to get scared, read Psalm 91. Keep your immune system up. Some of the patients I have gotten chemo with drink pomegranate juice and their CEAs come down. Tumeric also helps. My oncologist drinks a little apple cider vinegar (yuck) and a little olive oil each day. No sweets. Do what your doctors say and leave the rest in God's hands. Maybe someone mentioned it in a post but isn't there a technique where they burn lung cancer tumors (if they are not near major vessels)? If it's still warm where you live, take walks and deep breaths if you are able. Do things that you enjoy and that make you peaceful. Keep writing down your feelings. If my colon cancer comes back, I will write the problem down, tear it up and burn it in a bowl on my table. A friend told me that she and her children did that when things got too big to handle. And remember there are many who care about you, and One Who will walk with you.

I am new here but my shoulder is available anytime. You're in my prayers. Pat

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

you seem like a wonderful and caring person.nice to meet you.i recently read the book"Anticancer a new way of life"and i am changing my diet and including the things you mentioned.it sure cant hurt...Godbless...johnnybegood

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Oh Johnny i'm so sorry to hear about your lungs my dear i will be sending best wishes hugs Tina

luvmum
Posts: 457
Joined: Dec 2010

I have tears in my eyes reading the posts of this thread. You are not alone my dear. Although I'm not a patient, as a caregiver, I totally understand how you feel. My heart is aching to read your post and remind me of my mum who is also fighting so hard yet have new tumors in her lung. Her liver surgeon mentioned about 'tomotherapy' to treat the tumors in lung. Maybe you can talk to a specialist and see if they can do something for you. From my understanding it can go with chemo at the same time!

Hang in there and stay strong! We all support you!
Hugssss Dora

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Johnny, I am sad to hear this but wanted to say you can stay strong and you are NOT alone. I have been off the board for several mos, no special reason other than some days I just couldn't bring myself to read more sad news. You have been an inspiration to so many, including me. Now it's our turn. I was diagnosed 2 years ago this Thanksgiving and given a short time.. a few months. Went on Folfox, and Avastin did great, finished it and took 9 mos off and then the tumors (liver) started to grow. At that time I decided with my oncologist's approval to go to Mayo Clinic snd see if I was a candidate for resection.

Mayo is awesome... after about 10 appointments and every test imaginable it was determined I was a candidate and that I could have the surgery and be cured. I was going to be operated on by one of THE top liver surgeons and chief of the liver transplant team was going to be my anesthesiologist along with about a dozen more doctors and nurses. A big deal for sure since they were also going to remove part of my colon where the primary tumor had been. It was gone thanks to Folfox and Avastin. Keep in mind you cannot have a resection (I"m sure you know) if you have cancer in other organs.

Cry and lean on my shoulder any time. My email is JSAMeet@aol.com.. email me any time. I will call you or whatever you need. Yes it is scary, enough to make you vomit but it's not over. You are here and you are not going any place soon.

After about 1 hr and all of the surgery going to be laproscopic, they found nodules throughout my abdomen, too small to be detected even by a PET scan. They closed me up and my hope for a cure was over.

I came home 2 days later and my oncologist started me on Folfiri with Avastin a few weeks after that, in March. I am doing well, some side effects and neuropathy from the Folfox.
My tumors started growing during the time I was off chemo, I have 7 in my liver both sides. My CEA went from 8 to 200 and as of now is 14.5. My latest PET scan is the best I've had in 2 years and the tumors are small, the cancer activity is diminished.

Sorry for all this writing but I'm doing it to let you know you cannot give up hope. Believe. There are more options and mine spread fast when I was off the chemo then got smaller and smaller and smaller after I went back on it. Yours can too!!!! 3 weeks will zoom by like it did with me and once you are back on you will see the positive results.

Please please do not give up, we need YOU too. You will be in my prayers each day and night. And in between. Hugs from Orlando, God Bless You - Joyce

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

joyce for your encouraging news.i do remember you posting on how they closed you up because the cancer was just to bad.i felt so bad for you and now you are sitting there telling me its going to be ok.YOU are a strong woman and i may just take you up on that e-mail message.you take care and hang in there and thanks for the shoulder....Godbless....johnnybegood

Livingbyfaith's picture
Livingbyfaith
Posts: 56
Joined: Sep 2007

I am sorry to hear this however I see more and more cancer is treated as a chronic condition. They treat it as it moves around. And if you can have a quality of life while doing this, its worth it. Fight on, love your horse, we have 3 and they are such a joy to me. Horses even when in pain seem to fight on, we need to do the same. We will only walk this road once, I am counting on heaven and eternal life, but want to enjoy this life while I am here. Have you heard of radiation seeding? Could this be a help? There are new things daily. What about a second opinion? Keep researching. A good book out "From Incurable to Incredible" success stories of I believe stage IV cancers. Loved it. I will be praying for you. Janet

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