Moms not doing so well...

sleepless in jersey

Sorry guys haven't been on in awhile Mom has just started her 4th line of tx and just received her 2nd tx of navelbine. Her face is so red/ eyes have little slits in them thats how swollen they are/ rt ankle swelling and just pure exhaustion. Wants to go back to bed when she just woke up. Had her 2nd lung blown with the talc on 10/24 and now on oxygen 24/7 and raised the meter up now on thanksgiving from 3 to 4 1/2. She is starting to lose hope and she lost faith in her doctors. Could any body share some ideas on relief of her symptoms. Onc mentioned possibly to put her on a small amt of lasix. She takes the ventolin puffer only cause I make her (she said it does nothing and gives her a sore throat) Not on steroids either.
Mom doesn't leave the house except for doctor appt.'s or chemo. I need to get a wheel chair when were at the offices that they have, it's just to exhausting for her to walk that much.
Im grasping for anything right now.

grannylove

Sorry to hear....
Sleepless! I know how disheartening it is to deal with when Mom has lost faith in the docs and is losing hope fast. She is getting exhausted and not seeing any positive results. Have her docs given her any positive feedback at all? I am sure she is not feeling quality life. I might be out of line but I think it might be a good idea for you and Mom to talk to a life coach. Some will come to your home to talk, so you will not have to transport Mom. The life coach will be able to address the depression issues that your mother is feeling and she has a right to be feeling depressed sometimes. She has been battered with this awful monster and tx for quite some time now. God bless her heart! She is one tough woman! And Mom could not ask for a better advocate! Being a caregiver is a very difficult task and you are to be commended. I just pray that she gets some positive results soon and the side effects get under control. I am sorry that I do not have any profound words of wisdom for you. I do know what you are going thru, as I was caregiver to my own Mother who was dx with stage iv nsclc. Stay strong and my prayers are with you both. Cheryl

sleepless in jersey

grannylove said:

Sorry to hear....
Sleepless! I know how disheartening it is to deal with when Mom has lost faith in the docs and is losing hope fast. She is getting exhausted and not seeing any positive results. Have her docs given her any positive feedback at all? I am sure she is not feeling quality life. I might be out of line but I think it might be a good idea for you and Mom to talk to a life coach. Some will come to your home to talk, so you will not have to transport Mom. The life coach will be able to address the depression issues that your mother is feeling and she has a right to be feeling depressed sometimes. She has been battered with this awful monster and tx for quite some time now. God bless her heart! She is one tough woman! And Mom could not ask for a better advocate! Being a caregiver is a very difficult task and you are to be commended. I just pray that she gets some positive results soon and the side effects get under control. I am sorry that I do not have any profound words of wisdom for you. I do know what you are going thru, as I was caregiver to my own Mother who was dx with stage iv nsclc. Stay strong and my prayers are with you both. Cheryl

Thanks Cheryl
I was starting to lose hope on here, until you responded to try to pick me up. I have been posting since Jan. and have posted a number of times and heard nothing until now I thank you I needed that!
Is a life coach the way to go and how does one go about getting one and or finding the right connection?
Im sure Mom is dealing with depression just dont think its all depression since started this new TX and now alls she wants to do is sleep or sit on the couch its been 2 1/2 wks.

I was speaking to Deb back in Aug when Mom had her 1st surgery when the surgeon operated on the wrong lung which showed Mom how Doctors lie and cover each other which has also caused Mom to lose faith with all her Doc's.
We just sent out her whole pkt to Sloan Kettering where we went for her 2nd opionion back in Jan. the Onc does 2nd opinion thru mail/phone so were waiting patiently for that envelope.

Thanks again for your advice and comfort!

grannylove

sleepless in jersey said:

Thanks Cheryl
I was starting to lose hope on here, until you responded to try to pick me up. I have been posting since Jan. and have posted a number of times and heard nothing until now I thank you I needed that!
Is a life coach the way to go and how does one go about getting one and or finding the right connection?
Im sure Mom is dealing with depression just dont think its all depression since started this new TX and now alls she wants to do is sleep or sit on the couch its been 2 1/2 wks.

I was speaking to Deb back in Aug when Mom had her 1st surgery when the surgeon operated on the wrong lung which showed Mom how Doctors lie and cover each other which has also caused Mom to lose faith with all her Doc's.
We just sent out her whole pkt to Sloan Kettering where we went for her 2nd opionion back in Jan. the Onc does 2nd opinion thru mail/phone so were waiting patiently for that envelope.

Thanks again for your advice and comfort!

We are here for you.....
Please never doubt that. Sometimes we might feel like we do not have the right things to say that can help so we are silent. I do apologize for that. I am glad to hear that you have sought another possible route by sending a pkt to Sloan Kettering. I would have dropped the present doc like a hot potato had he operated on my wrong lung! But that is me. I pray that there can be another line of tx for Mom that will be easier on her. As for finding a life coach, I am not sure where you live but contact your local cancer society or local cancer center. They will be able to direct you to the organization that you will be able to contact. Some life coaches are psychologists who specialize in treating people with life threatening diseases and then there are cancer coaches who are usually themselves survivors, but have had some training in social work. Either way you go, it is good to have someone that Mom and yourself can talk to face to face who know exactly what is going on and can help with alot of the issues that you both are confronting. Alot of them will also go with Mom and you to tx or doc visits. You are getting worn down also, (mentally and physically), and you need to be able to help Mom make rational decisions on tx etc. I really think they will be able to help with the load you are carrying. I hope you will make that call. I think it will be like a breath of fresh air for you and Mom. Praying that the light is shining brighter for both of you and let Mom know that prayers and positive thoughts are coming her way. She needs a new injection of faith and hope! Too bad her present docs have dropped the ball! Shame on them. I will be putting Mom on my daily prayer card. I know she can get turned around. It just might take awhile longer and some new docs. God bless. Cheryl

sleepless in jersey

grannylove said:

We are here for you.....
Please never doubt that. Sometimes we might feel like we do not have the right things to say that can help so we are silent. I do apologize for that. I am glad to hear that you have sought another possible route by sending a pkt to Sloan Kettering. I would have dropped the present doc like a hot potato had he operated on my wrong lung! But that is me. I pray that there can be another line of tx for Mom that will be easier on her. As for finding a life coach, I am not sure where you live but contact your local cancer society or local cancer center. They will be able to direct you to the organization that you will be able to contact. Some life coaches are psychologists who specialize in treating people with life threatening diseases and then there are cancer coaches who are usually themselves survivors, but have had some training in social work. Either way you go, it is good to have someone that Mom and yourself can talk to face to face who know exactly what is going on and can help with alot of the issues that you both are confronting. Alot of them will also go with Mom and you to tx or doc visits. You are getting worn down also, (mentally and physically), and you need to be able to help Mom make rational decisions on tx etc. I really think they will be able to help with the load you are carrying. I hope you will make that call. I think it will be like a breath of fresh air for you and Mom. Praying that the light is shining brighter for both of you and let Mom know that prayers and positive thoughts are coming her way. She needs a new injection of faith and hope! Too bad her present docs have dropped the ball! Shame on them. I will be putting Mom on my daily prayer card. I know she can get turned around. It just might take awhile longer and some new docs. God bless. Cheryl

Yea I would have...
Yea I would have left the surgeon to, however Mom didn't want to (I think beacause he's the gewrew of that Hospital and whenever she gets any kind of tests or anything she has to have it within the Hospital system so they all have access to it on the computer).

When she went in for the 2nd lung the surgeon said lets mark this side and gave a chuckle so we told him dont worry we already marked the other side and said not this one...

My father and I would have loved from the get go for mom to have left from the 2nd visit at the Onc as well, but thats another story. We have to obide by Mom's wishes and just dble check everything they do and do are research to keep Mom on track!

We'll see what Sloan has to say, we should get that envelope before the 18th of Dec.

Thanks for your prayers, Mom surely needs them!

soccerfreaks

sleepless in jersey said:

Yea I would have...
Yea I would have left the surgeon to, however Mom didn't want to (I think beacause he's the gewrew of that Hospital and whenever she gets any kind of tests or anything she has to have it within the Hospital system so they all have access to it on the computer).

When she went in for the 2nd lung the surgeon said lets mark this side and gave a chuckle so we told him dont worry we already marked the other side and said not this one...

My father and I would have loved from the get go for mom to have left from the 2nd visit at the Onc as well, but thats another story. We have to obide by Mom's wishes and just dble check everything they do and do are research to keep Mom on track!

We'll see what Sloan has to say, we should get that envelope before the 18th of Dec.

Thanks for your prayers, Mom surely needs them!

Best wishes
to mom and her family. Granny is correct. If no one answers it is likely that we simply do not have any experience or knowledge in the area of concern and don't want to lead you (or anyone) astray). Usually, though, someone will answer eventually, if only to let you know, as granny did, that we ARE here and not simply ignoring.

Take care,

Joe

soccerfreaks

sleepless in jersey said:

Yea I would have...
Yea I would have left the surgeon to, however Mom didn't want to (I think beacause he's the gewrew of that Hospital and whenever she gets any kind of tests or anything she has to have it within the Hospital system so they all have access to it on the computer).

When she went in for the 2nd lung the surgeon said lets mark this side and gave a chuckle so we told him dont worry we already marked the other side and said not this one...

My father and I would have loved from the get go for mom to have left from the 2nd visit at the Onc as well, but thats another story. We have to obide by Mom's wishes and just dble check everything they do and do are research to keep Mom on track!

We'll see what Sloan has to say, we should get that envelope before the 18th of Dec.

Thanks for your prayers, Mom surely needs them!

PS
I am not the litigatious type, but if somebody operated on the wrong lung in this man's body I would have a good attorney's number on speed dial. For cases like this, they only get paid if they win.

Take care,

Joe

sleepless in jersey

soccerfreaks said:

PS
I am not the litigatious type, but if somebody operated on the wrong lung in this man's body I would have a good attorney's number on speed dial. For cases like this, they only get paid if they win.

Take care,

Joe

I had spoken to a old boss of mine(Gyne/ob Doc)and he said he would follow suit as well, however he said they would look at it as she is terminal and stage 4 doesn't have much time, but would also give compensation for the family for putting them thru what he did and a bit to poss to Mom for the wrong lung. How the surg puts it they both needed the talc anyway and we just did the opisite lung today.
It also caused her to go to ICU and get a blood transfusion as well which is not typical either.
The other tricky part is the rad who did the thorencentesis his consent that I have doesn't say which side he was suppose to do that my parents signed, but the surg consent for the vats is signed and the wrong side is clearly signed which is marked rt and lt so its very clear on his!
Mom however doesn't want us to do anything, I think she looks at it as she's in there hands still and hates all of them, they all cover for each other and we watched it with our own eyes and lie straight to our face! She is just to tired to switch and they are all about convience (my parents.)
We are waiting for the envelope to come back from sloan to see what they say what type of tx to offer mom etc...we are so scared Mom has gone down hill since the lat vats 10/24 and the docs cant explaine anything and push it off to the next doc.

I was told by somebody on this thread about cancergrace.org and they are Onc's on there who respond in and have given some advice. Not on wrong lun issue!

Thanks for responding in...I get it there is times that I just didn't respond in on somebody and saw no one did either and didn't know what to say, but I have to say when I was that person 2 other times it just really stinks. I just miss Deb so much! I would read to Mom her posts and they had alot in common

grannylove

sleepless in jersey said:

I had spoken to a old boss of mine(Gyne/ob Doc)and he said he would follow suit as well, however he said they would look at it as she is terminal and stage 4 doesn't have much time, but would also give compensation for the family for putting them thru what he did and a bit to poss to Mom for the wrong lung. How the surg puts it they both needed the talc anyway and we just did the opisite lung today.
It also caused her to go to ICU and get a blood transfusion as well which is not typical either.
The other tricky part is the rad who did the thorencentesis his consent that I have doesn't say which side he was suppose to do that my parents signed, but the surg consent for the vats is signed and the wrong side is clearly signed which is marked rt and lt so its very clear on his!
Mom however doesn't want us to do anything, I think she looks at it as she's in there hands still and hates all of them, they all cover for each other and we watched it with our own eyes and lie straight to our face! She is just to tired to switch and they are all about convience (my parents.)
We are waiting for the envelope to come back from sloan to see what they say what type of tx to offer mom etc...we are so scared Mom has gone down hill since the lat vats 10/24 and the docs cant explaine anything and push it off to the next doc.

I was told by somebody on this thread about cancergrace.org and they are Onc's on there who respond in and have given some advice. Not on wrong lun issue!

Thanks for responding in...I get it there is times that I just didn't respond in on somebody and saw no one did either and didn't know what to say, but I have to say when I was that person 2 other times it just really stinks. I just miss Deb so much! I would read to Mom her posts and they had alot in common

Sleepless
Deb was a wonderful and caring go-to person, for sure. Even I, who have only been on this board for 7 months or so, miss her insight and humor. We did indeed lose a shining star. Most medical professionals will not speak out against one another.....common medical courtesy or something. I think we have all dealt with it sometime or another, especially when there are numerous docs involved in our care and tx. They use alot of medical mumbo jumbo, hoping that they can baffle us with it. Yes, I have heard of cancergrace.org but have not been on there. I did hear they have onco that can answer medical questions but am sure they will not answer legal ones. I also use another lung cancer support board, lunglovelink.org which has very caring and knowledgeable people also. I am praying that your Mom gets a good opinion back from Sloan Kettering and she will consider moving her tx there. Seems like way too many things have gone awry with her present docs and that can set her back considerably. Tell Mom to not lose hope, stay strong to fight this dreaded monster. One day at a time right now. God bless. Cheryl

mmt366

sleepless in jersey said:

I had spoken to a old boss of mine(Gyne/ob Doc)and he said he would follow suit as well, however he said they would look at it as she is terminal and stage 4 doesn't have much time, but would also give compensation for the family for putting them thru what he did and a bit to poss to Mom for the wrong lung. How the surg puts it they both needed the talc anyway and we just did the opisite lung today.
It also caused her to go to ICU and get a blood transfusion as well which is not typical either.
The other tricky part is the rad who did the thorencentesis his consent that I have doesn't say which side he was suppose to do that my parents signed, but the surg consent for the vats is signed and the wrong side is clearly signed which is marked rt and lt so its very clear on his!
Mom however doesn't want us to do anything, I think she looks at it as she's in there hands still and hates all of them, they all cover for each other and we watched it with our own eyes and lie straight to our face! She is just to tired to switch and they are all about convience (my parents.)
We are waiting for the envelope to come back from sloan to see what they say what type of tx to offer mom etc...we are so scared Mom has gone down hill since the lat vats 10/24 and the docs cant explaine anything and push it off to the next doc.

I was told by somebody on this thread about cancergrace.org and they are Onc's on there who respond in and have given some advice. Not on wrong lun issue!

Thanks for responding in...I get it there is times that I just didn't respond in on somebody and saw no one did either and didn't know what to say, but I have to say when I was that person 2 other times it just really stinks. I just miss Deb so much! I would read to Mom her posts and they had alot in common

Sleepless, it has been quite
Sleepless, it has been quite a while since I reached out to you. But please know that I have continued to follow both your moms journey, as well as yours. Since my wife Linda passed on May 31st, I have had this feeling of being physically and emotionally spent with not a lot of extra energy. However, reading your latest entry brings back that enormous feeling of responsibility I had to help back when Linda was fighting her hardest, when things looked particularly bleak.
Continue asking the questions and don't back down, NO regrets!

I am thinking good thoughts and praying for your mom and you. Continue to fight the fight. Life is Good!
mmt

sleepless in jersey

mmt366 said:

Sleepless, it has been quite
Sleepless, it has been quite a while since I reached out to you. But please know that I have continued to follow both your moms journey, as well as yours. Since my wife Linda passed on May 31st, I have had this feeling of being physically and emotionally spent with not a lot of extra energy. However, reading your latest entry brings back that enormous feeling of responsibility I had to help back when Linda was fighting her hardest, when things looked particularly bleak.
Continue asking the questions and don't back down, NO regrets!

I am thinking good thoughts and praying for your mom and you. Continue to fight the fight. Life is Good!
mmt

Thank you Granny Love and mmt366
For your positive thoughts and prayers they are much needed!

Yes it has been a very long time since I have heard from you mmt and it was good to see your post, I understand, hope you and your daughter are doing well!

We will see what the letter says from Sloan weather or not I could get Mom to switch, time will tell.
In the mean time mom will be getting a wheel chair she nolonger could take those long walks from the parking lot to the Doctors anymore...

Dont know if its the chemo, but she has gotten very feisty and emotional.

Just a FYI my Dad had received a letter from his attorney that he is retiring at the end of the year and that its been a cple of yrs since you have done your will and a lot has changed in the law so you need to come in (he didn't know about mom either)
So dad stops in real quick to make an apptointment and how the state laws have changed that he would have to pay the state thousands of dollars if he didn't make some changes, so I am writing to tell you all this so this does not happen to any of you!!