I am losing hope....... please help me if you can
Comments
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Same heredorookie said:First of all Breathe
Dont give up hope, those doctors dont know when its your time, only your higher power does. Have faith in that. I will pray for you if you dont mind. I feel your pain and hate that you are suffering so much, you are not alone here we are all here for you. Please let us know if we can do anything for you.
God Bless you
Beth
You are in my prayers don't give up I know exactly How it is to get bad news It rips your guts out You are not alone
michelle0 -
Yes, keep fighting...dorookie said:First of all Breathe
Dont give up hope, those doctors dont know when its your time, only your higher power does. Have faith in that. I will pray for you if you dont mind. I feel your pain and hate that you are suffering so much, you are not alone here we are all here for you. Please let us know if we can do anything for you.
God Bless you
Beth
Ditto on what every one is saying here and do try juicing and fruits and veggies. Sometimes it's tough changing one's diet but really, it's more of a life style change. My days are now flled with fresh food. Yesterday, I sat on a bench under my apricot tree and ate 5 of them. My bother dropped off fresh corn still in the husk, my broher in law dropped off sweet potatoes, and my sister brought me cherries right off her tree. This is how they are taking care of me. We live in the San Joaquin Valley and fruts and veggies are in abundance. I have 6 varieties of grapes growing on my porgela, I have a peach orange and lemon tree. I am growing cucumbers, squash, tomoatoes, watermelon, and cantelopue. I just pick what I want from the baskets that are in my kitchen. They have become my source of food, until I broil some chicken or fish. I eat little meals/snacks of fruit thoughout the day instead of set meals. My nausea was bad this last chemo, but I kept nibbling on fruit, I was okay. I did buy a juicer and the juices are great.
I have heard facts and myths about sugar and white flour; so hey, I stay away from sweets to include soda. I drink juice if I have to have something other then water. I don't really drink alchohol, do an ccasaional glass of wine but not during chemo. I was never a bread eater, so I can say no to those bisuits at Red Lobster. I eat lots of greens, kale, spinach, collard and mustard greens, just saute in some garlic, onion and olive oil, add some chicken broth, simmer (I had a couple of banana peppers and some of the juice, it takes some of the bitteress away). If you like you can add chicken or turkey sausage links. I usually put some in for hubby, he eats it all over cornbread. I serve Northern beans on the side for me. I do make provolone quesidillas when I want the flour taste but with corn tortillas. I triangle cut some corn tortillas, throw then in the oven to get crisp, throw then in a skillet with a bit of olive oil, toss in some beat up eggs over the torillas, let it cook by turn it over a couple times, throw some green enchilada sauce over the dish, close lid... add cheese if you like, if I use any, I use a bit of provolone, some like colby jack. Wholla, great breakfast.
Just some suggestions, I'm just trying the healthy way. I have nothing to lose and but possbily all to gain! Maybe another option for you.
BYW: If you have to buy the fruit and veggie, I would buy organic if possible, only buy what you can consume in a couple days, set it out so you can see it, as you know the old saying, out of sight, out of mind.
Blessings.0 -
kick it back!
Hi Jennie,
What a blow- I'm so sorry! I'm sure you were excitedly looking forward to getting answers at MD Anderson and then were sadly disappointed in what they did/didn't tell you.
You've gotten some great advice from the people who posted above. I want to echo their words-DO NOT GIVE UP and KNOW THAT THERE IS STILL HOPE! I hate it when I hear people have had doctors give them their prognosis of "how long they still have". I, for one, NEVER want to hear a doctor tell me that & I will let them know that up front! They may think they're accurate in that but, like others have already said, they don't know who you are AND there is NO WAY for them to know anything FOR SURE!! If I were you, I'd give myself no more than another day to deal with the emotional blow & I'd stand up and fight again- seek out another opinion or two from some of the recommended places- perhaps Vanderbilt or Sloan Kettering or anywhere else where someone might still give you a chance of doing surgery. Like John said, many people who initially are considered inoperable CAN become a surgical candidate with a good response to chemo. I was in that position upon my diagnosis. I had too many widespread tumors to be considered for surgery, but I had a great response to the chemo (MUCH better than they ever thought possible!), and did end up having liver surgery after all. I'm still here & am doing okay (not NED, but managing things well!!) Another option other than surgery to look into would be RFA or various types of the latest in technology radiation- cyberknife, stereotactical radiation, or tomotherapy. Those three are similar to each other but slightly different. Google them. Many surgeons won't consider the surgery if you still have other tumors elsewhere in your body. I found one who would at UCSD- he did my liver resection when I still had a few small nodules in my lungs. Also, for RFA and the other types of exact radiation, it doesn't matter how many others you have. They'd probably work on the largest ones or most dangerous ones first. Seek out a radiation oncologist to get an evaluation for that. A surgeon usually wouldn't be the one to recommend it- for them, it's "surgery or nothing".
Look up and blessings to you- I'm thinking of and praying for your spirit to become more relaxed and positive and HOPEFUL today!
Lisa0 -
Hope
Jennie,
I read your post just now. I am so sorry you have got this news. My husband was told surgery wasn't an option either. He seems to be doing well (if there is such a thing) on Chemo. Not as many side effects as some folks.
I agree with John and all of the other comments. After Chemo who know's what that will do to the cancer.Don't give up hope. We are all pulling for you. Paula G.0 -
FOOTPRINTS
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."0 -
Decisionnudgie said:FOOTPRINTS
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
You have all certainly given me something to think about. I know that no matter what I do this beast will still be here tomorrow. I am going to start chemo Monday (Folfax) here at MDA for 2 weeks. I will then fly home for 2 weeks. During that time at home I am going to revisit my onc. there and see what he has to say about MDA. I will return to MDA for the following 2 week round and when I leave that time I am heading elsewhere for a third opinion.
The docs here at MDA say RFA is out cause there more than likely is more than the 1 nodule on my liver even tho only 1 lights up so that would be futile since the others would be popping up in the future. Same with the surgery...they say 9 times out of ten there is always more when they actually get in there... so what??? cant they just cut t hem out too? They say..why... just so they can come back...we cant keep cutting on you. this is why they say my surgery is no use. They also said something to me that REALLY made no sense. After they get my CT scans back from today they can tell me up front just by that if I (or anyone else for that matter) would be a surgery candidate. They say they deal in the realities and not the "what ifs"
How do I know the people here are not wrong?..... maybe I am NOT a surgery candidate...ever? How do i know that? I just dont know who to listen to and that is where all this confusion is coming in. The one thing I do know for sure.... I NEED CHEMO NOW!..... that is why I want it started now..... they can continue your treatment anywhere...right???? If I decide to go elsewhere I need to know that.
Anyway... thank you all for your comments and strength..... It has helped me a lot
Jennie0 -
I'm really shocked
Jennie,
I'm really shocked at what they told you at MD And. about being able to tell up front who's a surgery candidate and that RFA "is out because more will just keep popping up in the liver".
I don't get it- I know of other people on this board who have had surgeries more than once and RFA more than once. Yes, their doctors think more may keep popping up, but they just keep fighting what pops up! Also, like I said, I was told I wasn't a surgical candidate and then after 10 rounds of Folfox chemo, I DID become a surgical candidate. I have heard of a few others who had the same situation. To deal with "reality, not the what-ifs" doesn't make sense to me either. If my doctors had this attitude, I probably wouldn't be here right now, but I AM here and will expect my doctors to keep fighting. If they ever give up on me, I will keep searching until I find someone who will NOT give up on me.
I'm glad you're getting another opinion & I'm going to pray that you will have a great response to the chemo and that you'll surprise and amaze those doctors!!!
Hang in there and keep at it!!
Hugs,
Lisa0 -
Jennie........lisa42 said:I'm really shocked
Jennie,
I'm really shocked at what they told you at MD And. about being able to tell up front who's a surgery candidate and that RFA "is out because more will just keep popping up in the liver".
I don't get it- I know of other people on this board who have had surgeries more than once and RFA more than once. Yes, their doctors think more may keep popping up, but they just keep fighting what pops up! Also, like I said, I was told I wasn't a surgical candidate and then after 10 rounds of Folfox chemo, I DID become a surgical candidate. I have heard of a few others who had the same situation. To deal with "reality, not the what-ifs" doesn't make sense to me either. If my doctors had this attitude, I probably wouldn't be here right now, but I AM here and will expect my doctors to keep fighting. If they ever give up on me, I will keep searching until I find someone who will NOT give up on me.
I'm glad you're getting another opinion & I'm going to pray that you will have a great response to the chemo and that you'll surprise and amaze those doctors!!!
Hang in there and keep at it!!
Hugs,
Lisa
I was sitting in my hot tub when I called Vanderbilt and Diane answered on the second ring....I told her that I needed help bad...I told her that I had 4 children ages 4-5-13-22 and I have to stay alive so my children will ever have a chance at anything...I told her that if I stay in this town I will die and I know it, can you help me please...
This was the extent of our conversation, she asked me if I had been diagnosed and I said yes so she told me that I would have an appointment there for a second opinion in less than a week. I told her I didn't want a second opinion, I wanted the best Dr in the world and Dr Herline to me was it.....This was on a Friday.....Monday I was sitting in his office discussing options on radiation and chemo and then surgery after chemo/rad...
Jennie.....through all the tears and bad thoughts you have about all this , there is nothing you can change about what is happening , there is something you can do to fight it. You have to get through the sorrow and depression of it, then you need to get mad at it, I mean really pissed at it....I kicked a trashcan clear across my yard one day, the next day everything started looking up....You wanna know why ?........
*****Because I took back control of my life*****.......as you need to also...
We love ya girl, now lower your head and go after it full bore....don't give it nothing and kick its tail starting now........!!!!!!!!!!!0 -
QuestionBuzzard said:Jennie........
I was sitting in my hot tub when I called Vanderbilt and Diane answered on the second ring....I told her that I needed help bad...I told her that I had 4 children ages 4-5-13-22 and I have to stay alive so my children will ever have a chance at anything...I told her that if I stay in this town I will die and I know it, can you help me please...
This was the extent of our conversation, she asked me if I had been diagnosed and I said yes so she told me that I would have an appointment there for a second opinion in less than a week. I told her I didn't want a second opinion, I wanted the best Dr in the world and Dr Herline to me was it.....This was on a Friday.....Monday I was sitting in his office discussing options on radiation and chemo and then surgery after chemo/rad...
Jennie.....through all the tears and bad thoughts you have about all this , there is nothing you can change about what is happening , there is something you can do to fight it. You have to get through the sorrow and depression of it, then you need to get mad at it, I mean really pissed at it....I kicked a trashcan clear across my yard one day, the next day everything started looking up....You wanna know why ?........
*****Because I took back control of my life*****.......as you need to also...
We love ya girl, now lower your head and go after it full bore....don't give it nothing and kick its tail starting now........!!!!!!!!!!!
Lisa and Buzzard..... where did you go for your cancer treatments?
Jennie0 -
Keep fighting
I am Stage 4 and full of this cancer crap..I am on chemo to control it and have a good quality of life. I am doing great and planning a 4 week trip in July to drive to PA to see my new grandson who was born just today. I try to keep a good outlook and I plan on being around for a while because I have things yet to complete in my life. I felt lost everytime I had a recurrence but I have a good team of doctors and the posts on this site that helped me deal with it. I will keep you in my thoughts and prayers...Just keep up the fight..Hugs to you, Audrey.0 -
Jennie...What are you listening too?jenalynet said:Keep fighting
I am Stage 4 and full of this cancer crap..I am on chemo to control it and have a good quality of life. I am doing great and planning a 4 week trip in July to drive to PA to see my new grandson who was born just today. I try to keep a good outlook and I plan on being around for a while because I have things yet to complete in my life. I felt lost everytime I had a recurrence but I have a good team of doctors and the posts on this site that helped me deal with it. I will keep you in my thoughts and prayers...Just keep up the fight..Hugs to you, Audrey.
Please don't take this as a personal attack. I would like to know if you are truly listening to your doctors or are you only tuning into the negative. I ask this because I think perhaps you are putting a negative spin on what they are saying instead of a positive one. It's difficult to understand why they would rule out RFA simply because it will come back or they might not get it all. You need to speak directly with an interventional radiologist. They will be more than happy to spear you once a month if you want them to. I would understand if they didn't agree to do RFA until after chemo. I do think it is important for you to get on chemo as soon as possible. An RFA procedure would delay your treatment for several weeks. But once you get 5-6 treatments under your belt then any interventional radiologist worth his salt will get you in and out in just a few days. As for the comment, "we just can't keep cutting on you". BS! Well sort of. You will need to limit the mount of work done on your lungs. You will need at least one whole lung to function properly but the liver grows back. I've had 2 resections (70% and 50%) within 6 months of each other. Both of those were performed with a midline incision. My surgeon says he will be comfortable performing at least 2 more midline incision resections before he moves to the conventional incision below the rib. He said I could have 2 or 3 of those. Then he would move to my back and do it backward a few times. That's 9 resections if I need it. Not to mention 2 RFA's I've already had. If the tumors are in the right places you could conceivably get RFA every 45 days. I think you need to develop a game plan. I personally would start by selecting a competent surgeon. Once you pick your surgeon, ask he or she to pick the oncologist they have the best relationship with. Then ask the surgeon to recommend a good interventional radiologist. You may never have surgery but your intent should always be moving in that direction. You decide how you are going to approach this not the oncologist. The only thing you need the oncologist for is to administer the chemo and make sure you're healthy enough for chemo. I like my oncologist but he doesn't control my treatment. I do.
You have to understand that this is a four headed dragon you're fighting. The disease is one head, the doctors, the government and the insurance companies are the others . Any four of these can be just as deadly as the disease. You have to keep your wits about you. Just hearing the negative will severely handicap you. You have to keep your ears, eyes, and mind open, see all the angles and be vigilant.0 -
Buzzard in a Hot TubBuzzard said:Jennie........
I was sitting in my hot tub when I called Vanderbilt and Diane answered on the second ring....I told her that I needed help bad...I told her that I had 4 children ages 4-5-13-22 and I have to stay alive so my children will ever have a chance at anything...I told her that if I stay in this town I will die and I know it, can you help me please...
This was the extent of our conversation, she asked me if I had been diagnosed and I said yes so she told me that I would have an appointment there for a second opinion in less than a week. I told her I didn't want a second opinion, I wanted the best Dr in the world and Dr Herline to me was it.....This was on a Friday.....Monday I was sitting in his office discussing options on radiation and chemo and then surgery after chemo/rad...
Jennie.....through all the tears and bad thoughts you have about all this , there is nothing you can change about what is happening , there is something you can do to fight it. You have to get through the sorrow and depression of it, then you need to get mad at it, I mean really pissed at it....I kicked a trashcan clear across my yard one day, the next day everything started looking up....You wanna know why ?........
*****Because I took back control of my life*****.......as you need to also...
We love ya girl, now lower your head and go after it full bore....don't give it nothing and kick its tail starting now........!!!!!!!!!!!
We call that Hillbilly Stew around these parts!0 -
Negativesnommintj said:Jennie...What are you listening too?
Please don't take this as a personal attack. I would like to know if you are truly listening to your doctors or are you only tuning into the negative. I ask this because I think perhaps you are putting a negative spin on what they are saying instead of a positive one. It's difficult to understand why they would rule out RFA simply because it will come back or they might not get it all. You need to speak directly with an interventional radiologist. They will be more than happy to spear you once a month if you want them to. I would understand if they didn't agree to do RFA until after chemo. I do think it is important for you to get on chemo as soon as possible. An RFA procedure would delay your treatment for several weeks. But once you get 5-6 treatments under your belt then any interventional radiologist worth his salt will get you in and out in just a few days. As for the comment, "we just can't keep cutting on you". BS! Well sort of. You will need to limit the mount of work done on your lungs. You will need at least one whole lung to function properly but the liver grows back. I've had 2 resections (70% and 50%) within 6 months of each other. Both of those were performed with a midline incision. My surgeon says he will be comfortable performing at least 2 more midline incision resections before he moves to the conventional incision below the rib. He said I could have 2 or 3 of those. Then he would move to my back and do it backward a few times. That's 9 resections if I need it. Not to mention 2 RFA's I've already had. If the tumors are in the right places you could conceivably get RFA every 45 days. I think you need to develop a game plan. I personally would start by selecting a competent surgeon. Once you pick your surgeon, ask he or she to pick the oncologist they have the best relationship with. Then ask the surgeon to recommend a good interventional radiologist. You may never have surgery but your intent should always be moving in that direction. You decide how you are going to approach this not the oncologist. The only thing you need the oncologist for is to administer the chemo and make sure you're healthy enough for chemo. I like my oncologist but he doesn't control my treatment. I do.
You have to understand that this is a four headed dragon you're fighting. The disease is one head, the doctors, the government and the insurance companies are the others . Any four of these can be just as deadly as the disease. You have to keep your wits about you. Just hearing the negative will severely handicap you. You have to keep your ears, eyes, and mind open, see all the angles and be vigilant.
Snommintj,
No....I definately do not take it as a personal attack. Everyone here should say what is on their minds. You asked if I was putting a negative spin on things instead of a positive.....yes... I guess that is because that is how they presented it to me.... in a negative way... they gave me nothing to work with other than the fact that chemo would be my only recourse.... and then told me on Friday they would give me an estimate of how long I could expect chemo to stay working for me. I dont even want to know that. They said since my last CT scan they are sure my tumors have grown (because i have not had any treatment yet)and to be prepared for that on Friday as well. No surgery...ever... so hummmm.... positive? ... not exactly what I was feeling. Every time I looked for a bright side... there wasn't one. I lack the knowledge that a lot of you have on this subject. I think "man, surely these doctors know wht they are talking about... they are specialists!" Then why dont I FEEL it? Since I have mets to lungs and liver.... they won't do surgery....ever.... even if they use RFA to the 1 in my liver... leaving nothing there.... leaving on 1 organ with mets.... no still no surgery... dont get it. Right now i am going to go thru the chemo and see what happens with that. I sure do appreciate all your words.
Jennie0 -
Jennie.......and John.......idlehunters said:Negative
Snommintj,
No....I definately do not take it as a personal attack. Everyone here should say what is on their minds. You asked if I was putting a negative spin on things instead of a positive.....yes... I guess that is because that is how they presented it to me.... in a negative way... they gave me nothing to work with other than the fact that chemo would be my only recourse.... and then told me on Friday they would give me an estimate of how long I could expect chemo to stay working for me. I dont even want to know that. They said since my last CT scan they are sure my tumors have grown (because i have not had any treatment yet)and to be prepared for that on Friday as well. No surgery...ever... so hummmm.... positive? ... not exactly what I was feeling. Every time I looked for a bright side... there wasn't one. I lack the knowledge that a lot of you have on this subject. I think "man, surely these doctors know wht they are talking about... they are specialists!" Then why dont I FEEL it? Since I have mets to lungs and liver.... they won't do surgery....ever.... even if they use RFA to the 1 in my liver... leaving nothing there.... leaving on 1 organ with mets.... no still no surgery... dont get it. Right now i am going to go thru the chemo and see what happens with that. I sure do appreciate all your words.
Jennie
Jennie....To answer your question I had surgery at Vanderbilt-Ingram Cancer Center in Nashville Tennessee....
and John.....Buzzard stew is considered a 5 Star meal here in Ky....:)0
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