Clearing the air
07-03-2013, 06:13 AM
#1
Registered User
Thread Starter
Join Date: Mar 2004
Posts: 10,478
Likes: 0
Received 0 Likes
on
0 Posts
Clearing the air
This is bound to be a long and wandering missive. And given my usual lack of finesse, it will more than likely contain expressions of opinion and language that some may find offensive. Life is often offensive and much like me, it can be utterly lacking in tact or diplomacy.
However, those who choose to actually read this all too self-indulgent stream-of-consciousness of mine, please understand that it is lacking in any malice, anger, or any intent of deliberate offense. Electrons can do many amazing things, but they do a totally inadequate job of conveying tone or intent when splattered across a computer screen.
I have shared some of the details here of my “situation” (what a piss-poor euphemism that word can be), but I haven’t gone into much detail.
I’m sharing them now, not in search of pity or sympathy - I require none, nor desire any - but simply because I haven’t quite figured out how to broach the subject with members of my family, for reasons I'll attempt to explain in a bit.
As a handful of you closest to me here know, I was recently diagnosed with a terminal illness – namely emphysema. After numerous consultations with pulmonologists, an examination of my symptoms, MRIs, CT scans, etc., it appears that I was initially misdiagnosed. I have a little known, fairly rare, and progressive disease called Idiopathic Pulmonary Fibrosis. Which, in layperson’s terms, means that scar tissue is accumulating in my lungs for yet unknown reasons. Short of transplantation (not something I would even consider given my age), there is no cure. And there’s not much in the way of treatment here in the US beyond Oxygen supplementation. Thankfully, I haven’t reached that stage yet, I only require O2 during heavy exercise. Something those heartless bastards at pulmonology rehab make me do twice a week, incidentally.
However, approximately two-thirds of folks who contract the disease die within five years of diagnosis. There is a drug being used in Europe that shows great promise in slowing and even stopping the progression of IPF, in some cases. However, the US FDA has been slow to approve its use here in the US. Even if I was able to attain access to the drug, the drug itself would cost me approximately forty thousand dollars a year. But such is the wonderful and humane healthcare system we have in this country that so many people keep telling me about.
It’s rather ironic that all those years of hard drinking, drugging, smoking, and brawling have nothing to do with my current condition. I was positive all that self-destructive shit would catch up with me and kill me eventually. Just born lucky, I guess.
I’ve learned from fairly extensive reading on the subject that although the cause is unknown, there may be a family (genetic) connection. I know there’s no history of it on my mother’s side, but I know nothing of the paternal side of my family. Not that it would make a bit of difference to me at this point.
Which brings me to the point I originally intended to make with this longwinded, rambling vent of mine. I am now in the position of facing a very difficult conversation about my declining health with my daughters and older grandchildren. I also have the nearly impossible task of having to explain to my eighty-one year old mother why she is probably going to survive her oldest son. Rori is already aware of most of what’s going on, but I’ve kept her in the dark about the extent of it for the time being. I dread those conversations far more than death itself, for the pain it's going to bring them. Having the same discussion with friends also concerns me, but for different reasons. I've seen the effects of those conversations firsthand. People's perceptions and behaviors suddenly and irreversibly change. Relationships change or self-destruct altogether. Not knowing quite what to say, those who were once friends avoid the person, or begin to treat him/her differently in a variety of ways, which almost invariably affects the relationship negatively.
Oddly enough, I’m far more concerned about the effects of my having this disease on other people, rather than myself. As for me, I’m not sad, angry, fearful, depressed, or even surprised. If I were the superstitious type, I might be more than a little rattled and pissed off.
The idea that I might spend all eternity floating on some cloud trapped alongside an insufferable pack of pious, obsequious assholes irritates me to no end.
As does the thought I might spend an interminable amount of time in someone’s attic bumping into things, making spooky noises, and being imperiously summoned to hold cryptic conversations with some greedy, delusional, and credulous douchebag on some sleazy, exploitative television program (I’m looking at you, John Edward).
I believe reality is far more mundane. Upon drawing my last breath, I’ll simply return to the very same place I was before I was born – nowhere. And try as I might, I cannot recall feeling the slightest bit put out by having been there.
One bit of trivia concerning IPF. The singer Robert Goulet died of it. Personally, I think after singing one of the most horrid songs with some of the most absurd lyrics ever written – “MacArthur Park” – the prick had it coming.
However, those who choose to actually read this all too self-indulgent stream-of-consciousness of mine, please understand that it is lacking in any malice, anger, or any intent of deliberate offense. Electrons can do many amazing things, but they do a totally inadequate job of conveying tone or intent when splattered across a computer screen.
I have shared some of the details here of my “situation” (what a piss-poor euphemism that word can be), but I haven’t gone into much detail.
I’m sharing them now, not in search of pity or sympathy - I require none, nor desire any - but simply because I haven’t quite figured out how to broach the subject with members of my family, for reasons I'll attempt to explain in a bit.
As a handful of you closest to me here know, I was recently diagnosed with a terminal illness – namely emphysema. After numerous consultations with pulmonologists, an examination of my symptoms, MRIs, CT scans, etc., it appears that I was initially misdiagnosed. I have a little known, fairly rare, and progressive disease called Idiopathic Pulmonary Fibrosis. Which, in layperson’s terms, means that scar tissue is accumulating in my lungs for yet unknown reasons. Short of transplantation (not something I would even consider given my age), there is no cure. And there’s not much in the way of treatment here in the US beyond Oxygen supplementation. Thankfully, I haven’t reached that stage yet, I only require O2 during heavy exercise. Something those heartless bastards at pulmonology rehab make me do twice a week, incidentally.
However, approximately two-thirds of folks who contract the disease die within five years of diagnosis. There is a drug being used in Europe that shows great promise in slowing and even stopping the progression of IPF, in some cases. However, the US FDA has been slow to approve its use here in the US. Even if I was able to attain access to the drug, the drug itself would cost me approximately forty thousand dollars a year. But such is the wonderful and humane healthcare system we have in this country that so many people keep telling me about.
It’s rather ironic that all those years of hard drinking, drugging, smoking, and brawling have nothing to do with my current condition. I was positive all that self-destructive shit would catch up with me and kill me eventually. Just born lucky, I guess.
I’ve learned from fairly extensive reading on the subject that although the cause is unknown, there may be a family (genetic) connection. I know there’s no history of it on my mother’s side, but I know nothing of the paternal side of my family. Not that it would make a bit of difference to me at this point.
Which brings me to the point I originally intended to make with this longwinded, rambling vent of mine. I am now in the position of facing a very difficult conversation about my declining health with my daughters and older grandchildren. I also have the nearly impossible task of having to explain to my eighty-one year old mother why she is probably going to survive her oldest son. Rori is already aware of most of what’s going on, but I’ve kept her in the dark about the extent of it for the time being. I dread those conversations far more than death itself, for the pain it's going to bring them. Having the same discussion with friends also concerns me, but for different reasons. I've seen the effects of those conversations firsthand. People's perceptions and behaviors suddenly and irreversibly change. Relationships change or self-destruct altogether. Not knowing quite what to say, those who were once friends avoid the person, or begin to treat him/her differently in a variety of ways, which almost invariably affects the relationship negatively.
Oddly enough, I’m far more concerned about the effects of my having this disease on other people, rather than myself. As for me, I’m not sad, angry, fearful, depressed, or even surprised. If I were the superstitious type, I might be more than a little rattled and pissed off.
The idea that I might spend all eternity floating on some cloud trapped alongside an insufferable pack of pious, obsequious assholes irritates me to no end.
As does the thought I might spend an interminable amount of time in someone’s attic bumping into things, making spooky noises, and being imperiously summoned to hold cryptic conversations with some greedy, delusional, and credulous douchebag on some sleazy, exploitative television program (I’m looking at you, John Edward).
I believe reality is far more mundane. Upon drawing my last breath, I’ll simply return to the very same place I was before I was born – nowhere. And try as I might, I cannot recall feeling the slightest bit put out by having been there.
One bit of trivia concerning IPF. The singer Robert Goulet died of it. Personally, I think after singing one of the most horrid songs with some of the most absurd lyrics ever written – “MacArthur Park” – the prick had it coming.
07-03-2013, 06:50 AM
#2
I don't know what to say about those conversations that must be had. We've had that type of conversation with a close family member who is terminally ill (probably less than six months) with cancer. They are difficult and emotional and there are choked up voices/emotions and some 
with just about every phone call since we heard the news.
You're the one with the bad diagnosis. You call the shots. If you want to be vague about the future or how long you will be on the earth, when speaking to children, grandchildren and mother, be vague, as the future is not guaranteed to any of us. I'm sure most of your family members have access to the internet and once you tell them your diagnosis they'll be looking things up. Answer their questions as they are asked, but if you don't want to offer info don't.
Let Rori in, Dean. Tell her what she needs to know, it will be difficult and emotional but I'd be darn pi$$ed if Rick was ill and didn't give me the specifics. Enjoy every day. Five years could easily turn into ten.
with just about every phone call since we heard the news. You're the one with the bad diagnosis. You call the shots. If you want to be vague about the future or how long you will be on the earth, when speaking to children, grandchildren and mother, be vague, as the future is not guaranteed to any of us. I'm sure most of your family members have access to the internet and once you tell them your diagnosis they'll be looking things up. Answer their questions as they are asked, but if you don't want to offer info don't.
Let Rori in, Dean. Tell her what she needs to know, it will be difficult and emotional but I'd be darn pi$$ed if Rick was ill and didn't give me the specifics. Enjoy every day. Five years could easily turn into ten.
07-03-2013, 07:39 AM
#3
Dean, I agree with Lainey on this point, but can Rori deal with it in the same way you want to deal with it with respect to what you tell others? This is a tough one.
Dean, I'll be as unemotional in this response as your original post seems to request. Forgive me if it seems too clinical. This is what I would do. It may not be right for you or anyone else.
As to all other members of the family and friends, I would not rush to tell them I am terminal and untreatable. Five years is a long time to be on everyone's death watch. I'd time this out and give only that quantum of information that let's folks know I have something wrong. I'd bring it up during a discussion about aches and pains. "The leg is doing as well as can be expected but now I'm having respiratory problems. Yes it impacts my life. Yes I need therapy. No, it probably won't ever go away. Yes I may get worse." Whatever else you want to include about the nature of the illness. A large percentage of the population suffers from respiratory illness, so you will not be unique in that regard. You can even go so far as to admit that it shortens your life, but I'd leave out the five years part for now. We all die of something and a lot of folks you know now will be dead in five years. (and yes, I know I didn't need to tell you that but it just feels good to point out there a still a bunch of folks out there you will outlive and I'll even be glad to see some of them go before you)
Leaving aside a breakthrough in treatment, which would moot the whole problem, I assume this disease will reach a stage that it limits your mobility and ability to care for yourself. I don't know how long that takes to develop, but at that stage, or as you approach it, is probably the better time to tell friends and family the terminal nature of this illness.
This is just how I see it. I'd want everyone to treat me the same for as long as I could pull it off. I do hope you can tell Rori everything and that she can deal with this in whatever way you chose, but you would know that better than I.
07-03-2013, 09:40 AM
#4
Registered User
The above is sound advice on the personal issues. I will just reiterate what was in a thread that Rob and I contributed to a few weeks ago.
Make sure everything is in order; papers, wills, trusts, beneficiaries. I remember your posts on your prior marriage, and if I recall correctly, you would be very displeased (to say the least) if you had forgotten to change a beneficiary of some policy, or account, and your prior spouse had a windfall.
My prior spouse had surgery for lung cancer earlier this year, and while her first scan after chemo came out well, she has the odds working against her for a recurrence. So I know personally how hard it is to discuss an illness like that with the one having it. Some of your friends and/or relatives will ignore you, or the subject, because they won't know what to say. It may seem cold of them, but they won't know any better. You might broach the subject first, if you want to talk about it with them.
Personally, I think it sucks.
Make sure everything is in order; papers, wills, trusts, beneficiaries. I remember your posts on your prior marriage, and if I recall correctly, you would be very displeased (to say the least) if you had forgotten to change a beneficiary of some policy, or account, and your prior spouse had a windfall.
My prior spouse had surgery for lung cancer earlier this year, and while her first scan after chemo came out well, she has the odds working against her for a recurrence. So I know personally how hard it is to discuss an illness like that with the one having it. Some of your friends and/or relatives will ignore you, or the subject, because they won't know what to say. It may seem cold of them, but they won't know any better. You might broach the subject first, if you want to talk about it with them.
Personally, I think it sucks.
07-03-2013, 09:54 AM
#5
Former Moderator
Dean, i'm truly grateful to get your post on my screen. You did have us wondering a bit about the details of your illness.There is a natural tendency toward a maudlin reponse to such definitive news about a friend's terminal prognosis. Ha, but academics like you are good at choosing language that maintains emotional distance from what's happening and at treating tragedy with a sense of humor. I think that often makes reality easier to come to terms with.
^^^ I think Bill expresses it well. We are all on a terminal path. It is just that the doc hasn't put a number on it yet. Personally I can say that I have been at the place you describe as a return to the prebirth state. I agree that the two states of nonconsciousness are similar.
Fortunately, or maybe unfortunately, some well meaning EMTs used miracle drugs and equipment to yank a 'deceased cyclist' back from out of the abyss. Any teasing obligatory contact or feathery kiss with our mortality can be seriously life changing for us, but I strongly agree with you that the impact is greater on family and friends.
^^^ You characterize your personal responses and reactions to us here very accurately and well, you hopeless bastard! You are one of the Vintage members that I admire most and you have meant a lot to me from the beginning. You make us laugh, and cry; and we always learn a lot from your informed posts. Your command of the language is remarkable. It is truly hard for me to imagine the Vintage Forum without you! So I'm just not going to try. Who knows, I still might outlive you We will just have to see.
I think the thing that bothers me too about your prognosis is the looming progressive suffering and chronic pain, but we find ways of dealing with that too.
I'm not opining about whom to inform in what detail when. That's very personal and unique to each of our circumstances, but I like what Bill and Lainey have said.
I don't need to say this, but know that you have great friends and abiding support here. We are good for at least five or ten years!
^^^ I think Bill expresses it well. We are all on a terminal path. It is just that the doc hasn't put a number on it yet. Personally I can say that I have been at the place you describe as a return to the prebirth state. I agree that the two states of nonconsciousness are similar.
Fortunately, or maybe unfortunately, some well meaning EMTs used miracle drugs and equipment to yank a 'deceased cyclist' back from out of the abyss. Any teasing obligatory contact or feathery kiss with our mortality can be seriously life changing for us, but I strongly agree with you that the impact is greater on family and friends.^^^ You characterize your personal responses and reactions to us here very accurately and well, you hopeless bastard! You are one of the Vintage members that I admire most and you have meant a lot to me from the beginning. You make us laugh, and cry; and we always learn a lot from your informed posts. Your command of the language is remarkable. It is truly hard for me to imagine the Vintage Forum without you! So I'm just not going to try. Who knows, I still might outlive you We will just have to see.
I think the thing that bothers me too about your prognosis is the looming progressive suffering and chronic pain, but we find ways of dealing with that too.I'm not opining about whom to inform in what detail when. That's very personal and unique to each of our circumstances, but I like what Bill and Lainey have said.
I don't need to say this, but know that you have great friends and abiding support here. We are good for at least five or ten years!
07-03-2013, 10:04 AM
#6
Registered User
Thread Starter
Join Date: Mar 2004
Posts: 10,478
Likes: 0
Received 0 Likes
on
0 Posts
I don't know what to say about those conversations that must be had. We've had that type of conversation with a close family member who is terminally ill (probably less than six months) with cancer. They are difficult and emotional and there are choked up voices/emotions and some with just about every phone call since we heard the news.
You're the one with the bad diagnosis. You call the shots. If you want to be vague about the future or how long you will be on the earth, when speaking to children, grandchildren and mother, be vague, as the future is not guaranteed to any of us. I'm sure most of your family members have access to the internet and once you tell them your diagnosis they'll be looking things up. Answer their questions as they are asked, but if you don't want to offer info don't.
Let Rori in, Dean. Tell her what she needs to know, it will be difficult and emotional but I'd be darn pi$$ed if Rick was ill and didn't give me the specifics. Enjoy every day. Five years could easily turn into ten.
with just about every phone call since we heard the news. You're the one with the bad diagnosis. You call the shots. If you want to be vague about the future or how long you will be on the earth, when speaking to children, grandchildren and mother, be vague, as the future is not guaranteed to any of us. I'm sure most of your family members have access to the internet and once you tell them your diagnosis they'll be looking things up. Answer their questions as they are asked, but if you don't want to offer info don't.
Let Rori in, Dean. Tell her what she needs to know, it will be difficult and emotional but I'd be darn pi$$ed if Rick was ill and didn't give me the specifics. Enjoy every day. Five years could easily turn into ten.
The equity from our current house will be used to pay off our bills, furnish the new place, and maybe take a trip or two. Fortunately, in a weird sort of way, my illness doesn't require any medications or treatment, so I don't expect much in the way of medical bills in the future. i see the pulmonologist and the cardiologist once every six months. And once my insurance coverage for rehab runs out, the rehab will begin charging me all of seven dollars per visit - fourteen bucks a week. I believe they just enjoy torturing me, and would do it for free if I pushed the issue.
My mother and I have an understanding that should she survive me, she will leave the house to Rori, free and clear, as Rori will be entered on the deed as having rights of survivorship in the event of me croaking (in both the figurative and literal senses of the word.
) I also have a life insurance policy, the proceeds of which she can use to pay property taxes, amenity fees, etc.. As for my kids, I'm giving them all my tools, furniture, etc. now, so they don't have to deal with the hassles of probate, etc..
07-03-2013, 10:37 AM
#7
Registered User
Thread Starter
Join Date: Mar 2004
Posts: 10,478
Likes: 0
Received 0 Likes
on
0 Posts
As to all other members of the family and friends, I would not rush to tell them I am terminal and untreatable. Five years is a long time to be on everyone's death watch. I'd time this out and give only that quantum of information that let's folks know I have something wrong. I'd bring it up during a discussion about aches and pains. "The leg is doing as well as can be expected but now I'm having respiratory problems. Yes it impacts my life. Yes I need therapy. No, it probably won't ever go away. Yes I may get worse." Whatever else you want to include about the nature of the illness. A large percentage of the population suffers from respiratory illness, so you will not be unique in that regard. You can even go so far as to admit that it shortens your life, but I'd leave out the five years part for now. We all die of something and a lot of folks you know now will be dead in five years. (and yes, I know I didn't need to tell you that but it just feels good to point out there a still a bunch of folks out there you will outlive and I'll even be glad to see some of them go before you)
Leaving aside a breakthrough in treatment, which would moot the whole problem, I assume this disease will reach a stage that it limits your mobility and ability to care for yourself. I don't know how long that takes to develop, but at that stage, or as you approach it, is probably the better time to tell friends and family the terminal nature of this illness.
This is just how I see it. I'd want everyone to treat me the same for as long as I could pull it off. I do hope you can tell Rori everything and that she can deal with this in whatever way you chose, but you would know that better than I.
Leaving aside a breakthrough in treatment, which would moot the whole problem, I assume this disease will reach a stage that it limits your mobility and ability to care for yourself. I don't know how long that takes to develop, but at that stage, or as you approach it, is probably the better time to tell friends and family the terminal nature of this illness.
This is just how I see it. I'd want everyone to treat me the same for as long as I could pull it off. I do hope you can tell Rori everything and that she can deal with this in whatever way you chose, but you would know that better than I.
On a related note, I would like to impose on you a bit from time to time if I may, privately. I know it's not your specialty and I'm certainly not seeking free legal advice from you, but I would like to be better prepared and know what questions to ask, etc. when I do sit down with an attorney here in FL who deals with probate, outstanding, debts, etc.. If you'd rather not, as I'm sure you get asked innumerable times by friends and acquaintances about various legal matters, I'll understand.
Trending Topics
07-03-2013, 10:40 AM
#8
I don't know if I would tell my mom if I was in your shoes.....
That news, could cause major harm to her, all the worrying she would do due to it.
I would tell my children, so that maybe they would spend more time with me during the remaining years. And so that the grandkids would also get to know there granddad a little more before he is gone for good.
Life is just too short.....
That news, could cause major harm to her, all the worrying she would do due to it.
I would tell my children, so that maybe they would spend more time with me during the remaining years. And so that the grandkids would also get to know there granddad a little more before he is gone for good.
Life is just too short.....
07-03-2013, 10:47 AM
#9
Registered User
Thread Starter
Join Date: Mar 2004
Posts: 10,478
Likes: 0
Received 0 Likes
on
0 Posts
The above is sound advice on the personal issues. I will just reiterate what was in a thread that Rob and I contributed to a few weeks ago.
Make sure everything is in order; papers, wills, trusts, beneficiaries. I remember your posts on your prior marriage, and if I recall correctly, you would be very displeased (to say the least) if you had forgotten to change a beneficiary of some policy, or account, and your prior spouse had a windfall.
My prior spouse had surgery for lung cancer earlier this year, and while her first scan after chemo came out well, she has the odds working against her for a recurrence. So I know personally how hard it is to discuss an illness like that with the one having it. Some of your friends and/or relatives will ignore you, or the subject, because they won't know what to say. It may seem cold of them, but they won't know any better. You might broach the subject first, if you want to talk about it with them.
Personally, I think it sucks.
Make sure everything is in order; papers, wills, trusts, beneficiaries. I remember your posts on your prior marriage, and if I recall correctly, you would be very displeased (to say the least) if you had forgotten to change a beneficiary of some policy, or account, and your prior spouse had a windfall.
My prior spouse had surgery for lung cancer earlier this year, and while her first scan after chemo came out well, she has the odds working against her for a recurrence. So I know personally how hard it is to discuss an illness like that with the one having it. Some of your friends and/or relatives will ignore you, or the subject, because they won't know what to say. It may seem cold of them, but they won't know any better. You might broach the subject first, if you want to talk about it with them.
Personally, I think it sucks.
07-03-2013, 11:49 AM
#10
Registered User
Join Date: Mar 2005
Location: Flintstone GA
Posts: 12,471
Likes: 0
Received 0 Likes
on
0 Posts
Seems to me you know your loved ones very well and your plan and the advice you've gotten here are sound. Rori does need to be fully aware of your condition as it will have the most direct impact on her life going forward.
And rest assured there will be no deferential treatment from me.
And rest assured there will be no deferential treatment from me.