I need a serious opinion (kinda long)

[Valker]

So sorry you (or anyone) have to go through this. As a long time school teacher, your local high school probably has hundreds of pieces of info on where to get the suggested meds.

[BF]

Thanks for all of the prayers and concerns guys....I really appreciate them.  Truly...it means a lot to me.    Being on this board for the last several years, I've come to the conclusion that there's a lot of pretty smart people on here.

The intravenous Vitamin C thing....

Never heard of it before...but I'll ask Doc about it.  

The pot thing.....

I've already talked to my Doc/Oncologist about the pot thing...and I've already tried not one, but two different drugs that have THC variants in them to help with the nausea and appetite.  Neither one of them worked. At this point, at least I'm not losing anymore weight...at least not much.  I've gained a couple, then I'll lose a couple.  Right now, I'm at 168.  I used to be almost 280.  For reference, I'm 6'2".  

Before I tried either of those drugs with the THC varients, I did talk to my employer and they said that there are no rules set in place as yet to deal with that issue, but that for my case and others like me, that they'd look the other way if any drug testing was to occur.  That was straight from the HR lady.  

As for the smoking it thing....

He can't prescribe it as yet in the state of Florida.  As yet, there's only like three doctors in the entire state that can prescribe it....and he's not one of them...yet.  The doctor licensing and the drugs/pot distribution part of it still has to be set up through-out the state....as yet, that ain't happening here.  Cities and towns everywhere around here are trying to legislate so called pot shops to where they can go....and so far, they haven't allowed for any to exist here.  Too many bible thumpers and folks that have watched Reefer Madness too many times.  They're all freaking out about it.  Progress.....

Doc says that whenever he can prescribe it and there's a place to go to get it, that he's not opposed to prescribing it.  As of now, it's wait and see what the politicians do.  

I'm not opposed to getting it off of the street either...and have thought about it.....and I'm pretty sure I know someone that can get it for me (at least I think he can), but from what I hear, the stuff on the streets is a lot more stronger than the stuff we used to smoke back in the old hippy days of my youth (did I just type that outloud?)  Not sure how that would effect (or is it affect) me.  Don't really want to get stoned, just looking to get the munchees.

My wife.....

Well...I don't really want to talk to her about this.  I've wanted to talk to the Doc about it...in private, but she's there for EVERY appointment.  She insists on going to every appointment and treatment session with me....which is a good thing...I want her there....but, I'd also like to be able to talk to the Doc in private once or twice too.  

I already know how she'd react, we've been married since 1975 so I'm pretty sure I know her....first she'd be mad as hell...then she'd probably cry...alot....then she'd be mad as hell again...possibly to the point of throwing things.

I don't know.....not sure if I can put her through that thought process or not.  Not all that sure she'd understand either.  I'd want her to understand, I'm not sure that she would.  

The laser thing.....  

I'll ask Doc about it, but I'm pretty sure that it's experimental and even if it worked, insurance wouldn't pay for it....but I'll ask.    

My Doc....

I love my Doc...he's great.  Easy to talk to.  He's also with MD Anderson...has access to the latest and greatest stuff...that's why I'm on the chemo that I'm on.  

My urologist recommended me to him...said that he's the best of the best around here.  I had a choice of three Oncologists to go to....I chose him.  It's a bit of a drive, especially in the summer with all of the tourists that flock here, but I don't care as long as I'm going to the best that I can go to...which I believe that I am.  

The chemo that I'm on.....

As I said....my doc is from MD Anderson...has access to the latest and greatest stuff....again as I said, that's why I'm on what I'm on.  I've been on two other chemos before this stuff and the side effects from those two were horrendous.  They really weren't very effective either....didn't do much to shrink my tumors.  I was on those two for a year.  It was then that they came out with this new stuff.  It was developed for lung cancer patients and it worked pretty good on them...so they thought that they'd try it on Renal Cell...and it showed promise there too.  So when the trails where over and it came out to everybody, that's when he put me on it.  It's not a chemo....although that's what everyone calls it....it's actually an immunotherapy drug.  

It's side effects, at first, weren't all that bad...and I thought to myself, self...this is great...but over the course of a year, the side effects have grown, and turned out to be, just as bad as the other chemos that I've been on before....exceptt that those chemos didn't cause pain like this immunotherapy drug does.  The pain coupled with the other normal side effects of chemo are driving me crazy.  I don't know how much more I can stand the pain coupled with throwing up.  

My pain meds.....

I have Oxycodone and Fentanyl patches.  They work...sorta.  

I haven't made up my mind one way or the other....that's why I'm asking for input from other people.  When and if the time comes that I feel like I need to make a decision one way or the other, I'd like to know what other people would do.  I haven't totally reached the end of my rope...yet...but right now I feel like I'm close to it.  I'm sick and tired of being sick and tired.    I've been there and done that and even have the t-shirt....it says..."EVERYTHING HURTS AND I'M DYING".  (Seriously...I really do have that shirt).  The wife didn't think it was too damn funny, but I thought....you have to have some sort of sense of humor I guess.  

[The emperor has no clothes]

BF, I'm glad you can still have a sense of humor about it.  As far as your wife, I totally get what you are saying. It sounds like our wives might be sisters. I don't know anything about the drug you are on now or if the weed would help. I can tell you the stuff nowadays is much stronger than what we were used to "back in the day". But all that really means is you don't have to smoke as much of it. As an example, where we might have smoked a joint before now just a bong hit is needed. This is probably a good thing, as any smoke in your lungs is not good. As far as advice, all I know is I would give it a shot. What's $20-$50 ? It may not help at all, but I'd sure be finding out . My best wishes for you and your wife. As I'm sure you know this is very hard for her also. Maybe even more so. Take care, my friend. 

[BF]

BF, I'm glad you can still have a sense of humor about it.  As far as your wife, I totally get what you are saying. It sounds like our wives might be sisters. I don't know anything about the drug you are on now or if the weed would help. I can tell you the stuff nowadays is much stronger than what we were used to "back in the day". But all that really means is you don't have to smoke as much of it. As an example, where we might have smoked a joint before now just a bong hit is needed. This is probably a good thing, as any smoke in your lungs is not good. As far as advice, all I know is I would give it a shot. What's $20-$50 ? It may not help at all, but I'd sure be finding out . My best wishes for you and your wife. As I'm sure you know this is very hard for her also. Maybe even more so. Take care, my friend. 

Sounds like the stuff of today is more like the hash of yesterday.  (Don't know how I know that stuff...must've read it somewhere  )

[Mr Whiskey]

What if I stop treatment?....do I get a year...or two?  Who knows...there's no guarantee....the end result is still the same.....I die...just sooner rather than later probably...but maybe with a lot less pain and throwing up.  

Do I stay on treatment and feel like crap the entire time for years on end, but maybe get a year...or two...8 to10 or more?  Who knows...there's no guarantee...the end result is still the same....I die.

I don't know what normal feels like anymore....whatever the hell normal is.  

I don't know how much more I can handle here....this crap really sucks the big one.  

Regardless whatever I do, I still have to sell the Valk before I go.  

If you were in my shoes, what would you do?  Please give it some serious thought.  Don't blow me off here....I'm serious as I can be.  

I just don't know how much more I can handle. 

Hey Brother, sounds to me like you're hurtin' bad enough ya gotta try a change.
What's the Doc's prognosis if ya stop the meds? Can he even give ya an educated guess as to what type of pain you might be lookin' at without 'em? Does he feel the cancers progression would cause you more pain than you're already in? Know someone who has stopped takin' it? If ya stop, can you go back on it? If you had known how bad the symptoms were gonna be before you started takin' it, would you?
If there just aren't any answers to these questions, what's your gut tell ya?
I think I hear ya sayin' you're ready to stop the meds in the hope of even a small relief for a little while as opposed to bein' miserable for the duration, however long that may be.
I say that's a damn brave thing to consider.
I say I think, for me, that hope would be worth it.
I say I'm prayin' ya have some relief
& I'm sayin' I love ya Brother, God Bless!

[..]

My lady friend is on her 3rd session of chemo. She has a hit at night to help her sleep. it aint legal in GA but f' them. We too talk about how long she thinks she may be able to put up with the side effects. Right now she's able to continue pretty much as normal apart from the days of feeling exhausted. The days of having a fried brain. The days of feeling like crap. the days of can't remember a damn thing. And so on.

We had Thumper who had numerous sessions of chemo until he got to the point where it was too much.

I didn't hear anyone criticizing him. If they thought otherwise they had the good sense to kept their mouth shut.

i had a friend in England too who  just couldn't face any more chemo sessions. He chose what he needed to do and was supported by his wife, daughter and son.

You need to do what you need to do. If others don't like it. Well it's your body. You can decide how much pain you can take every second of every minute of every hour of every day of every week of every month of every year.

Deciding you've had enough is not a sign of weakness.

[BF]

What if I stop treatment?....do I get a year...or two?  Who knows...there's no guarantee....the end result is still the same.....I die...just sooner rather than later probably...but maybe with a lot less pain and throwing up.  

Do I stay on treatment and feel like crap the entire time for years on end, but maybe get a year...or two...8 to10 or more?  Who knows...there's no guarantee...the end result is still the same....I die.

I don't know what normal feels like anymore....whatever the hell normal is.  

I don't know how much more I can handle here....this crap really sucks the big one.  

Regardless whatever I do, I still have to sell the Valk before I go.  

If you were in my shoes, what would you do?  Please give it some serious thought.  Don't blow me off here....I'm serious as I can be.  

I just don't know how much more I can handle. 

Hey Brother, sounds to me like you're hurtin' bad enough ya gotta try a change.
What's the Doc's prognosis if ya stop the meds? Can he even give ya an educated guess as to what type of pain you might be lookin' at without 'em? Does he feel the cancers progression would cause you more pain than you're already in? Know someone who has stopped takin' it? If ya stop, can you go back on it? If you had known how bad the symptoms were gonna be before you started takin' it, would you?
If there just aren't any answers to these questions, what's your gut tell ya?
I think I hear ya sayin' you're ready to stop the meds in the hope of even a small relief for a little while as opposed to bein' miserable for the duration, however long that may be.
I say that's a damn brave thing to consider.
I say I think, for me, that hope would be worth it.
I say I'm prayin' ya have some relief
& I'm sayin' I love ya Brother, God Bless!

I haven't had the chance to talk to him yet about this yet.  The reason is, is that my wife is ALWAYS there for every appointment/treatment session.  I want to talk to him, but I want to talk to him in private without the wife being there.  I pretty much know how she'd handle it, and it probably won't be very pretty....and I'm not ready to put her through that....yet.  

[BF]

My lady friend is on her 3rd session of chemo. She has a hit at night to help her sleep. it aint legal in GA but f' them. We too talk about how long she thinks she may be able to put up with the side effects. Right now she's able to continue pretty much as normal apart from the days of feeling exhausted. The days of having a fried brain. The days of feeling like crap. the days of can't remember a damn thing. And so on.

We had Thumper who had numerous sessions of chemo until he got to the point where it was too much.

There's an actual name for it....it's called Chemo Brain....and yes, I'm very much acquainted with it. 

I also followed Thumper's and ya'll posts.  I'm familiar with what he went through. 

[Bighead]

Make an appointment to go talk with him and don't clue her in on the appointment.

[BF]

Make an appointment to go talk with him and don't clue her in on the appointment.

You might be right.  I'll give it thought. 

[Oss]

You know that your wife does not have a right to go into your appt
but being a smart man you have gone with her so far

You said its some distance to the doc and maybe having her in the car with you is a good thing to and from   That said tell her during next appt " I need a few private moments with the doc "  then let her in at the end

crap will hit the fan but thats the way it is supposed to be

Got your PM

[Patrick]

I'd like to be able to help, but, don't know if I can.  

Its a tough decision for anyone to make.

When diagnosed I got my affairs in order and then sat in the back yard with the gun to my head. Inoperable stage 4 with a 20% survival rate. I decided to try the treatments [ chemo and radiation] and was recently declared cancer free.

It's a difficult decision. I hope you have found the best medical help for your problem and have confidence in them.

I have been asked to talk to others and have done so. I don't hesitate to talk to anyone about this if they want to.

[BF]

I'd like to be able to help, but, don't know if I can.  

Its a tough decision for anyone to make.

When diagnosed I got my affairs in order and then sat in the back yard with the gun to my head. Inoperable stage 4 with a 20% survival rate. I decided to try the treatments [ chemo and radiation] and was recently declared cancer free.

It's a difficult decision. I hope you have found the best medical help for your problem and have confidence in them.

I have been asked to talk to others and have done so. I don't hesitate to talk to anyone about this if they want to.

I've already had the radiation.  Thirty rounds of it.  Doc said it's all that he can give me without me being wheel chair bound for life...plus probably shitting myself too.  What fun that would be. 

[BF]

You know that your wife does not have a right to go into your appt
but being a smart man you have gone with her so far

You said its some distance to the doc and maybe having her in the car with you is a good thing to and from   That said tell her during next appt " I need a few private moments with the doc "  then let her in at the end

crap will hit the fan but thats the way it is supposed to be

Got your PM

Yeah, I'm trying to avoid the crap hitting the fan part for as long as I think that I can....'cause it most definitely will hit it when I go public with it with her.  

The driving part sometimes ain't bad and sometimes it only takes about 45 minutes or so.....and then, sometimes it takes an hour and a half or more.  Tourists suck.   

And then....sometimes, I need for her to drive as sometimes I just can't. 

[fudgie]

Im with Ritsema on this. Quality over quantity. Personally if I felt like this and couldn't do anything Id stop chemo. Soon as I got better Id go do the things I wanted till its time. Your wife may take it hard at first but she will understand.

[saddlesore]

I'm glad you feel comfortable enough to post this here as there are very many who care and can carry some of the burden.  
A month ago I read a letter from a nurse who treated cancer patients.  The letter was in the form of an apology because when she was diagnosed with cancer she saw things in a different way.  I'll keep searching for it and post if I can.
I never met you so I can't offer anything but my wishes for peace.
A big part of the problem here IMO is the indecision.  When you chose and what ever you choose will be right and bring you PEACE.


Found the link...http://people.com/human-interest/oncology-nurse-diagnosed-with-cancer-writes-apology-letter-to-patients/

[TJ]

Im with Ritsema on this. Quality over quantity. Personally if I felt like this and couldn't do anything Id stop chemo. Soon as I got better Id go do the things I wanted till its time. Your wife may take it hard at first but she will understand.

I'm with what these two have said... Thoughts and prayers for you and family and what ever you decide... 

[solo1]

I've read all of the responses and they validate my opinions of the concerned friends who we have here.

I cannot offer much.

You have some good advice from all here. You are the only one who decides.  Do whatever it takes to get the relief that you need.  Only one suggestion.  Maybe a pastor who has seen all types of suffering might help.  I do not mean the ones that say "Come to Jesus" but the ones who will support you in any way necessary and give you hope, peace, and comfort.

I would close by quoting Numbers, chapter six: We always conclude our church service with these beautiful words.  It is my prayer for you and to you, Bruce.

 The Lord Bless and Keep You
 The Lord make His Face shine upon You
 The Lord turn his Face toward You and give You Peace.

[old2soon]

Prayers up from the Ozarks. Another Brother I haven' met-YET. I'm in the Quality over Quantity and the smokn the M J crowd thingy. But-that's me and not you. The NOT feelin good all the time I have ZERO idea how I'd handle it. I do KNOW for handling it I'd come to you for lessons. Sit down and have a long talk with GOD. He Has helped me more than once and he has Always got time to listen.   No Way No How I can even Begin to feature WHAT yer going thru much less experiencing. I have NO frame of personal reference. I WILL continue PRAYING for you. RIDE SAFE.

[Dean of cool]

I gotta say, I've always felt like the VRCC was kind of like 'good' church.  I've read down through all the comments - giving advice, what works, doesn't work, and may work. Encouragement. How family responds.  Like the other guys I'm feelin you.  No easy answers.  It's real.  Don't know what I'd do if I were  in your shoes.  The VRCC is kind of like a church with the camaraderie and support of the guys coming around you.  It moves me to tears.  I know I got no business thanking everyone but I do. Most of all to you BF for your transparency.   I preach a lot about how Jesus promises the believer an eternal body, transformed like his. That's what the cross and the resurrection is all about. Taking an old sinner and making him brand new.  In real life it comes down to that.  No advice here, just heartfelt sympathy.   I hope this wasn't too long. I know you like to reason out things at a keyboard. Me too.  I'm just going to leave you with a promise.  "I am the resurrection and the life. He who believes in me will live even if he dies. And everyone who lives and believes in me will never die."  Jesus (John 11:25,26)  I'm praying too.  Oz had a good blessing.

[Jess from VA]

I agree with most of the thoughts, sentiments and advice provided.  Esp getting another doc, or doc's opinion(s), or some other pain med(s) (including weed, which if it was me, I'd already have it, by hook or by crook).  

I can only add one thing.  You speak in terms of continuing treatment or ceasing treatment as your only choices.  Given your Stage IV position, it seems to me you could opt for a sort of middle road (assuming the medicos would allow it).  That is, could you not forgo all treatment (or at least all treatment with moderate to terrible side effects) for a period of weeks to a month or two, just to try to discover how much improvement in your quality of life you could actually obtain?

I mean, you have been following all best medical advice for some time now, and you know to a certainty what quality of life that gives you.  But at this point, you do not really know how good or improved you might be able to feel without such treatment.  And it may not be all that much better, but it might be a whole lot better.  One might assume that getting off the full treatment (for a period) will shorten your life, and maybe that is so.  But maybe it is not so.  And maybe it doesn't really matter.

But at this stage (and with the bad quality of life you've described), it would seem to me you might feel rightfully entitled to feel as well as you can, at least one more time.  Having discovered whatever improvement you can get in a few weeks to two months (or so), you could then reassess the progress of your disease and your prognosis in the absence of this treatment, and then decide to either go back at it with a vengeance, or to quit for good.

What I meant above by permission of the medicos is really permission to return to full treatment after quitting all (or most) of it for a period.  They cannot stop you from quitting treatment, but maybe they would not let you come back, I don't know.  It's hard for me to understand how they could deny you a return to full treatment, but I suppose they could.

I am no doctor, though I worked in medical law for many years, my experience with cancer is minimal.  I suppose in (your particular) cancer treatment, taking a break from prescribed treatment (for a few weeks to two months) could be viewed as a catastrophic mistake.  Then my idea might be way off base.... but I doubt it.

My dad first was found with prostate cancer 30 plus years ago, and he had the radioactive pills (and all those side effects), and it was thought to be cured (or in full remission).  Then 15 years later it was back and he had surgery, and it was again thought to be cured (or in full remission).  When it came back the third time 15 years later in his eighties (by now he did not like the doctors much, and that's putting it mildly), it had metastasized (and he was doing very poorly, but very little physical pain).  They proposed all of the things you are going through now, and he told them he would do none of that, none.  They gave him six months, and he didn't even last six days.  I think he made his peace one night and decided to go, and did.  All of the family supported his decision, and we would have supported any decision he made.

One other cold piece of advice (which you certainly already know):  make all your decisions, wills, gifts, contacts, yada while you are still in good enough condition to do them.  There may come a time you are unable to do any of them.

I wish you fair sailing Bruce.

PS (on talking with the doc alone, arrange an uninterrupted phone call.  Presumably you both have phones)    



  

[Jess Tolbirt]

BF i knew you were ill but i didnt know how ill you are,, I have no words that havent been said above but rest assured i am praying and pullin for ya!!

[f6gal]

In theory, I would go along the those that said quality over quantity... in theory.  In reality, I don't know if I would be brave enough to make that choice.  I don't think any of us really know, until we're faced with that decision.  

I'm sure you know your wife well, but I'm not so sure you're giving her enough credit.  She knows you're suffering.  And she likely knows you're having doubts about treatment. Just sit with her and have the talk.  Tell her you just want to talk to your doc about the different scenarios.  She may surprise you.    

[The emperor has no clothes]

In theory, I would go along the those that said quality over quantity... in theory.  In reality, I don't know if I would be brave enough to make that choice.  I don't think any of us really know, until we're faced with that decision.  

I sure you know you wife well, but I'm not so sure you're giving her enough credit.  She knows you're suffering.  And she likely knows you're having doubts about treatment. Just sit with her and have the talk.  Tell her you just want to talk to your doc about the different scenarios.  She may surprise you.    

Best advice of the whole thread 

[Karen]

BF, I can only imagine what you're going through. I had lung cancer about 10 years ago, and after surgery, I was lying there wondering if it had been worth it. But I didn't need chemo or radiation, it was just the aftermath of the surgery that made me question. Listening to your experiences makes me feel like such a piker. Every one else here has come up with good ideas, but it's you that is experiencing all this. I like Connie's suggestion about talking it over with your wife. Is there an additional/alternate treatment that can give you some relief? Wish I could come up with a magic bullet, but all I have to offer  is my respect for your strength and courage, love for you being able to even express yourself so honestly and openly in your situation, and prayers for you to be able to decide the best course for your future.

[BF]

I've read all of the responses and they validate my opinions of the concerned friends who we have here.

I cannot offer much.

You have some good advice from all here. You are the only one who decides.  Do whatever it takes to get the relief that you need.  Only one suggestion.  Maybe a pastor who has seen all types of suffering might help.  I do not mean the ones that say "Come to Jesus" but the ones who will support you in any way necessary and give you hope, peace, and comfort.

I would close by quoting Numbers, chapter six: We always conclude our church service with these beautiful words.  It is my prayer for you and to you, Bruce.

 The Lord Bless and Keep You
 The Lord make His Face shine upon You
 The Lord turn his Face toward You and give You Peace.

Thanks.  I'm not particularly a religious man, or a church goer, but I was raised in the church and I am a believer.  Thank you Wayne.

I agree with most of the thoughts, sentiments and advice provided.  Esp getting another doc, or doc's opinion(s), or some other pain med(s) (including weed, which if it was me, I'd already have it, by hook or by crook). 

I can only add one thing.  You speak in terms of continuing treatment or ceasing treatment as your only choices.  Given your Stage IV position, it seems to me you could opt for a sort of middle road (assuming the medicos would allow it).  That is, could you not forgo all treatment (or at least all treatment with moderate to terrible side effects) for a period of weeks to a month or two, just to try to discover how much improvement in your quality of life you could actually obtain?

I mean, you have been following all best medical advice for some time now, and you know to a certainty what quality of life that gives you.  But at this point, you do not really know how good or improved you might be able to feel without such treatment.  And it may not be all that much better, but it might be a whole lot better.  One might assume that getting off the full treatment (for a period) will shorten your life, and maybe that is so.  But maybe it is not so.  And maybe it doesn't really matter.

But at this stage (and with the bad quality of life you've described), it would seem to me you might feel rightfully entitled to feel as well as you can, at least one more time.  Having discovered whatever improvement you can get in a few weeks to two months (or so), you could then reassess the progress of your disease and your prognosis in the absence of this treatment, and then decide to either go back at it with a vengeance, or to quit for good.

What I meant above by permission of the medicos is really permission to return to full treatment after quitting all (or most) of it for a period.  They cannot stop you from quitting treatment, but maybe they would not let you come back, I don't know.  It's hard for me to understand how they could deny you a return to full treatment, but I suppose they could.

I am no doctor, though I worked in medical law for many years, my experience with cancer is minimal.  I suppose in (your particular) cancer treatment, taking a break from prescribed treatment (for a few weeks to two months) could be viewed as a catastrophic mistake.  Then my idea might be way off base.... but I doubt it.

My dad first was found with prostate cancer 30 plus years ago, and he had the radioactive pills (and all those side effects), and it was thought to be cured (or in full remission).  Then 15 years later it was back and he had surgery, and it was again thought to be cured (or in full remission).  When it came back the third time 15 years later in his eighties (by now he did not like the doctors much, and that's putting it mildly), it had metastasized (and he was doing very poorly, but very little physical pain).  They proposed all of the things you are going through now, and he told them he would do none of that, none.  They gave him six months, and he didn't even last six days.  I think he made his peace one night and decided to go, and did.  All of the family supported his decision, and we would have supported any decision he made.

One other cold piece of advice (which you certainly already know):  make all your decisions, wills, gifts, contacts, yada while you are still in good enough condition to do them.  There may come a time you are unable to do any of them.

I wish you fair sailing Bruce.

PS (on talking with the doc alone, arrange an uninterrupted phone call.  Presumably you both have phones)   



 

I'm not sure Jess.  As progressive as this cancer has been in the past with me (it spread really quick with a bunch of tumors that have spread just about everywhere but my head and legs) if that would be a good idea if I wanted a return to chemo.

I do have all of the legal stuff already taken care of.  As soon as I found out I was stage IV, I went to see a lawyer.  Got it all done.

In theory, I would go along the those that said quality over quantity... in theory.  In reality, I don't know if I would be brave enough to make that choice.  I don't think any of us really know, until we're faced with that decision. 

I sure you know you wife well, but I'm not so sure you're giving her enough credit.  She knows you're suffering.  And she likely knows you're having doubts about treatment. Just sit with her and have the talk.  Tell her you just want to talk to your doc about the different scenarios.  She may surprise you.   

You're right.  I think I'll take her out to get a Blizzard and watch the sun go down and have a talk.  Getting a Blizzard and watching the sunset over the Bayou is one of her favorite things to do from time to time.

BF, I can only imagine what you're going through. I had lung cancer about 10 years ago, and after surgery, I was lying there wondering if it had been worth it. But I didn't need chemo or radiation, it was just the aftermath of the surgery that made me question. Listening to your experiences makes me feel like such a piker. Every one else here has come up with good ideas, but it's you that is experiencing all this. I like Connie's suggestion about talking it over with your wife. Is there an additional/alternate treatment that can give you some relief? Wish I could come up with a magic bullet, but all I have to offer  is my respect for your strength and courage, love for you being able to even express yourself so honestly and openly in your situation, and prayers for you to be able to decide the best course for your future.

Not really Karen.  Treatment for renal cell is extremely limited.  Back in 2005 when they first found the cancer on my right kidney, there was no treatment available...at all.  The only  reason I've lasted this long was that the cancer was confined to the kidney itself and hadn't spread.  Nine years later it spread to the left side.  They then took out my left adrenal and thought they had gotten it all.  Six months later...it was everywhere.  Two years later, here I am.

[ridingron]

PS (on talking with the doc alone, arrange an uninterrupted phone call.  Presumably you both have phones)   

I would call the doc and try to arrange the phone call as mentioned. Then do the blizzard and sunset thing. I would think she is in a lot of pain herself (mental) knowing she could lose you.

I can only imagine what you're going through. I have no idea what to say other than hang in there and try to look at the options and make an informed decision.

[gordonv]

Sorry, nothing more to add that hasn't already been said, , , but Prayers to you and for your health. What ever comes, I pray that you have peace of mind and spirit.

There is a lot I would think I would do, but I'm a realist, and realize that until it happens to me directly, I will never know, and I Pray, that I will never have to go through it myself.

I THANK YOU for writing about your ordeal, and I'm sure, making ALL of us think about this stag in our lives.

Only you know how far is far enough. All you need is time. If you can go long enough, there may be some light ahead for you, or even for others going through the same thing.

One other note, listen to the replies from the women. No matter what happens, or when it happens, I'm sure it will be tough on your wife. It might be easier to still have you around while she is going through that fear/grief.

[HayHauler]

BF, I have nothing to  add to all of the advice given before me.  Just know that all of us here Love you and we are praying for you.  It hurts my heart to hear that anyone is forced to go through.

God Bless you.

Hay

[3fan4life]

So many thoughtful responses.

And so much good information.

That should tell you that you are highly regarded here.

I cannot imagine the courage that it took to write the words which started this thread, but I know how courageous it was.


I can also only imagine what I would do if I were in your shoes, it is just one of those things that a person cannot "know" until they have walked down that road.

I like to think that I would fight it to the very end, But again I don't "Really" know.


I understand your wife being your number one concern.

You love her and you want to protect her as much as possible.

But,  Have the talk with her!

Allow her to have input and to say whatever she has to say.

Make her a partner in this just as she has been a partner in your life and marriage.

Let her know that you won't do anything that she isn't in agreement with.


Find a way to talk with your Doctor.

Maybe if you have the conversation with your wife first, she'll be OK with being there or allowing you to have some time with him alone.

If after having the talk with her you still don't think she'll do well, find another way.

Nowadays, most systems will allow you to send personal emails back and forth with your Doctor.


And, If smoking some pot might help with the symptoms then by all means give it a try.

My only concern would be its quality, I would want to be sure that it hadn't been laced with something else. 



Lastly, talk to God about it.

You don't have to be a "Regular" church goer to do this.

He will listen to you the same as he would The Pope.

God is not a respector of person's, we are all equal in his sight.


If you have a church that you are comfortable going to then go to it.

A good church and a good pastor will always be there to nurture and support those in need.


God, does provide healing.

But, You have to ask him for it.

Don't be afraid to ask Him.

He won't say No (sometimes He does say, "Not in this life").

He will always provide comfort and peace, again you must ask him for it.


I, will be praying for Comfort, Peace, Strength and Healing for you, as you continue to "Walk this Out".

Also, I have no idea if I can be a help to you or not, But feel free to PM me anytime if you would like to.

[grandpaweaver]

"Thanks.  I'm not particularly a religious man, or a church goer, but I was raised in the church and I am a believer.  Thank you Wayne."

This was the post I've been hoping for. I've read all through this and can only offer my prayers for you, your wife and family.

[signart]

"Thanks.  I'm not particularly a religious man, or a church goer, but I was raised in the church and I am a believer.  Thank you Wayne."

This was the post I've been hoping for. I've read all through this and can only offer my prayers for you, your wife and family.

+1
"The only difference in the sinners and the saints...
one is forgiven and the other one ain't"

[Bronson]

I would stop the chemo and live every good day I had left to the max. It will take you a while to gain back enough muscle to do anything. Eat clean and work for it every day is all you can do. I'm glad you are not afraid. I was when I was diagnosed years ago in my 20s. I beat the odds and lived, no chemo or further surgery. Just got lucky.
No one knows how long they have left. You made me reflect again on how my life is and how much better I could be as a person. Thanks for sharing part of your life with us. I hope you have good luck with your cancer, and good days ahead to enjoy.
Bronson.

[BF]

THANKS GUYS.   ALL of your inputs are grateful and truly useful to me on deciding which path that I might eventually take. 

I will take the wife out sometime soon for that Blizzard and have that talk.  Hope it goes better than anticipated....but we'll see. 

I will talk to the Doc about some of the advice and suggestions from you guys...thanks for those. 

Once again....I asked for advice here because I KNOW that there's a lot of really smart folks on here...I couldn't have come to a better place to ask. 

Thanks again...I'm truly appreciative.   

[BF]

talk it over with the family and drs. both and go from there.  

If the treatments are too unbearable and drs. say they will not get much better, if any,  ever,  that would be a tough choice for sure, at least for me.   Everyone has their breaking point and sounds like you have endured the pain and discomfort more than most could bare.  

My dad always said that we have no clue never understanding on how much pain and discomfort he had in his life the last 15+ years or so due to 3 spinal cord surgeries affecting his entire nervous system, etc.   being clumsy as well falling down and no feeling in hands or feet much at all forcing him to retire at only age 55.  

Do you have some good days still?   since being miserable and throwing up every single day, day after day,  due to the treatments would take its toll on anyone.  

best of luck and hang in there!  

I don't know why, but somehow I didn't read your post CD.  Yes, I do have some good days, and I have bad days, and then I have really dad days, and then sometimes I have some seriously bad days.  Really good days are very rare...but I do have some decent to good days...but it seems that there are more not so great days than there are good ones anymore. 

All of that weighs in on my thought process about all of this.  Thanks for asking.   

[Patrick]

I'd like to be able to help, but, don't know if I can.  

Its a tough decision for anyone to make.

When diagnosed I got my affairs in order and then sat in the back yard with the gun to my head. Inoperable stage 4 with a 20% survival rate. I decided to try the treatments [ chemo and radiation] and was recently declared cancer free.

It's a difficult decision. I hope you have found the best medical help for your problem and have confidence in them.

I have been asked to talk to others and have done so. I don't hesitate to talk to anyone about this if they want to.

I've already had the radiation.  Thirty rounds of it.  Doc said it's all that he can give me without me being wheel chair bound for life...plus probably shitting myself too.  What fun that would be. 

I believe I understand the position you're in and the decision you are about to make. Its a difficult one. I wish you the best.

[98valk]

THANKS GUYS.   ALL of your inputs are grateful and truly useful to me on deciding which path that I might eventually take. 

I will take the wife out sometime soon for that Blizzard and have that talk.  Hope it goes better than anticipated....but we'll see. 

I will talk to the Doc about some of the advice and suggestions from you guys...thanks for those. 

Once again....I asked for advice here because I KNOW that there's a lot of really smart folks on here...I couldn't have come to a better place to ask. 

Thanks again...I'm truly appreciative.   

BF,
God Bless u. Ask Jesus for guidance and wisdom.

All I can add is that Jesus can heal you if that is God the Fathers will for your life and all of those around you. Seek Him out for it is the only way you will know. God's will for all is that we accept His son Jesus the Christ our Lord and Savior so that we will have eternal life and spend eternity with Him.

Here is a good site www.DrDay.com who cured herself of cancer following God's principles and natural healing. The chemo is doing more damage to your body than the cancer is. IMHO u should stop it and go to a health wellness center to rebuild your body. Chemo was never a cure of cancer, it has always been a persons own immune system. A honest oncologist doctor will tell u that. chemo is used to remove cancer cells quickly and they hope they stopped early enough so that the body's immune system can recover and get rid of the rest. basically they play russian roulett with everybody.
some reading for u
http://articles.mercola.com/sites/articles/archive/2016/12/20/immunotherapy-for-cancer.aspx
http://www.naturalnews.com/kidney_cancer.html
http://www.naturalnews.com/048913_cannabis_cancer_treatment_herbal_medicine.html

www.drday.com
Dr. Lorraine Day reversed her severe, advanced cancer by rebuilding her immune system by natural therapies, so her body could heal itself.

Dr. Day is an internationally acclaimed orthopedic trauma surgeon and best selling author who was for 15 years on the faculty of the University of California, San Francisco, School of Medicine as Associate Professor and Vice Chairman of the Department of Orthopedics. She was also Chief of Orthopedic Surgery at San Francisco General Hospital and is recognized world-wide as an AIDS expert.

She has been invited to lecture extensively throughout the U.S. and the world and has appeared on numerous radio and television shows including 60 minutes, Nightline, CNN Crossfire, Oprah Winfrey, Larry King Live, The 700 Club, John Ankerberg Show, USA Radio Network, Art Bell Radio Show, Three Angels Broadcasting Network and Trinity Broadcasting Network.

[Cynic]

I read all of your post, and a few of the other's posts...being new here, I thought long and hard before extending my advice, and decided to comment, regardless of what the others had said...

Having been through terminal cancer with my mom and my wife, I can tell you from a firsthand eyewitness/caregiver perspective that it's all about quality of life. My mom was bedridden, and decided that as long as she was alive, she was going to live. Within a few months, she was able to get around in a wheelchair and eventually a walker. Less than 8 months after diagnosis, she walked down the aisle at the church using only my arm for support as she and Dad renewed their vows. Two weeks after Mom died, my wife was diagnosed with terminal cancer, so I went through it again. Both made the most of the life that they had left, and refused to let the disease and pain dictate their lives. Sure, there were bad days, but up until the last couple weeks for both of them, they were trying to live life as completely as possible.

If you are in too much pain to enjoy living, then what is the purpose of living? Medical marijuana isn't the answer for everyone, but cannabis oils treat many of the same symptoms without having to smoke, and are not as frowned upon as marijuana. Talk to your doctors, see if you are a candidate for cannabis (oil or marijuana).

I too now have a terminal disease, although different. I was diagnosed with interstitial lung disease almost 4 years ago and they gave me 5-10 years from onset of symptoms. Rather than waiting to die, I decided to go on disability (fortunately, I qualify for both Social Security and VA disabilities) and travel around and see America again while I'm still able to...national parks, monuments, all 50 states, etc. Based on the doctors' original prognosis, I could die this summer. Based on their latest test results, I should have another 4-6 years before I die. Of course, I could be killed by a drunk driver this evening; none of us know when or how we'll die.

My advise to you is to make the most of the time you have, enjoy life and those around you, and remember that only you can make these decisions for you. Others can give advice, but only YOU know the pain you are in.

Daryl

[BF]

I read all of your post, and a few of the other's posts...being new here, I thought long and hard before extending my advice, and decided to comment, regardless of what the others had said...

Having been through terminal cancer with my mom and my wife, I can tell you from a firsthand eyewitness/caregiver perspective that it's all about quality of life. My mom was bedridden, and decided that as long as she was alive, she was going to live. Within a few months, she was able to get around in a wheelchair and eventually a walker. Less than 8 months after diagnosis, she walked down the aisle at the church using only my arm for support as she and Dad renewed their vows. Two weeks after Mom died, my wife was diagnosed with terminal cancer, so I went through it again. Both made the most of the life that they had left, and refused to let the disease and pain dictate their lives. Sure, there were bad days, but up until the last couple weeks for both of them, they were trying to live life as completely as possible.

If you are in too much pain to enjoy living, then what is the purpose of living? Medical marijuana isn't the answer for everyone, but cannabis oils treat many of the same symptoms without having to smoke, and are not as frowned upon as marijuana. Talk to your doctors, see if you are a candidate for cannabis (oil or marijuana).

I too now have a terminal disease, although different. I was diagnosed with interstitial lung disease almost 4 years ago and they gave me 5-10 years from onset of symptoms. Rather than waiting to die, I decided to go on disability (fortunately, I qualify for both Social Security and VA disabilities) and travel around and see America again while I'm still able to...national parks, monuments, all 50 states, etc. Based on the doctors' original prognosis, I could die this summer. Based on their latest test results, I should have another 4-6 years before I die. Of course, I could be killed by a drunk driver this evening; none of us know when or how we'll die.

My advise to you is to make the most of the time you have, enjoy life and those around you, and remember that only you can make these decisions for you. Others can give advice, but only YOU know the pain you are in.

Daryl

Thanks, truly for your post.  I'm so sorry for your loss...it must be difficult for you I'm sure...as well as dealing with your own condition.  

Hopefully, I'll get the chance to talk to Doc this Thursday as I have an appointment with him then, as well as that's my chemo day.  I still haven't talked to the wife as yet because I wanted a chance to talk to the Doc first if I can.  

As much as I'd like to ride around the country, I simply can't.  I've lost enough muscle that riding most anything more than a moped is out of the question.  Besides, I'm still working.  I thought about going on disability, but after my last surgery, I spent 4 months at home recovering from that.  It about drove me nuts being at home.  There's only so much Price Is Right that any human can possibly watch.    Besides, I think that I'd probably feel like I was sitting at home just waiting to die.  

And also, my boss is good to me....told me that as long as I wanted to that I'd have a home there.  At this point, they pay me for what I know, not what I do.  Besides....I have a good crew that does the heavy work anyway.   It's my job to train new people (I've been there 31 years now), make sure tasks get done and make sure the Government side of the house is happy (and believe me...that's a job by itself  )....so I'm not having to do any hard work....just basically have to be there and drink a lot of coffee....and that's not hard for me at this point.  

I have given thought to buying something sporty such as a convertible or a corvette that has T-tops.  And I do need a new vehicle as my trusty 20 year old Expedition has seen better much better days, but practicality will probably take over and I'll get a new(er) truck instead of something sporty.  We'll see.  

Even if I chose quality of quantity, I still need something to drive.  

Thanks once again.  

[98valk]

BF,
remember not to over stress yourself. Lost my friend to Esophageal cancer (he never had smoked) a few yrs ago. he was on chemo for 4 months, fifth month he felt good, started living like he used to, went on a 220 mile ride on a saturday, before this he would limit to 100 mile even while he was on chemo. it was too much and his body just shut down, he died on the following tuesday. he was only 55.

God Bless you!
c.