Thread Drift

[indysteel]

(((red))). Well put, Oak. I very much agree.

I often wonder if part of the difficulty for those with terminal illness or illness that ultimately progresses to terminal, is knowing how far down a certain treatment road they really want to go and how and when to make that decision. It often seems to me that medical intervention takes on a life of its own. Once you start, it's hard to know when or if to stop, even when the writing is more or less on the wall. My husband's friend's mother brings this to mind. She's been on some form of chemo and/or radiation for years and despite the fact that her prognosis has been bad for a long time, she kept with it, treatment after treatment. It wasn't until late last week--after a botched biopsy--that she reached the end of her rope. Sadly, I don't know that any of her doctors helped her navigate that decision anywhere along the way.

I may have linked to this before, but this article from the New Yorker gave me much food for thought when I read it.

[OakLeaf]

This goes more to my original observation than to where this thread has drifted to, but here it is, since I've been thinking about it all afternoon.

Of all the safe, effective, time-tested herbal medicines in use today, there is one that's way, way more likely to be prescribed by US doctors than any other one.

Under US federal law, that particular herbal medicine is illegal to buy, sell, or grow in one's own backyard.

And the reason it's the most likely to be prescribed is BECAUSE it's illegal, and because of that, the pharmaceutical companies haven't been able to isolate one or two of the compounds in it, separate them from the other compounds in the plant, synthesize them, and monetize them, then bribe doctors to prescribe it with branded geegaws and free CME.

If that isn't irony, I don't know what is.

[salsabike]

I may have linked to this before, but this article from the New Yorker gave me much food for thought when I read it.

I think that is the best and most thoughtful article I have ever read on this, and I've read many. Thank you, thank you, thank you. It is a very active topic in our house right now and this article is a huge help.

[jobob]

I think that is the best and most thoughtful article I have ever read on this, and I've read many. Thank you, thank you, thank you. It is a very active topic in our house right now and this article is a huge help.

ITA, this is an excellent article. I'll show it to Lee sometime soon, we've already started to grapple with some of these issues with his dad. Thank you for posting it, I think it'll be helpful.

[indysteel]

You're very welcome, salsa and jo. I'm glad you found it helpful.

[OakLeaf]

Indy, that is a really good article. I'm not sure reading it would've broken through my family's denial, but it's somewhat comforting to know that so many families are so deep in denial when they enter hospice.

For me a really important point is this one: "Can mere discussions really do so much?" - not only comfort patients, but extend their useful lives. Parallel that with the recent study on doctor empathy in diabetes care. Empathy and conversation, of course, are the most basic forms of energy healing.

[Sky King]

reeling, reeling Reading the New Yorker article flooded me with emotion and memories, thanks Indy (sorta )
The story of Sarah, for the most part, is the same story I experienced with my mom. My mom did not want her cancer to be her end. Her doctors were much like the Dr's in Sarah's story, wow.
Needless to say, my Mother refused to accept hospice because to her that meant she was giving up. She died in the hospital, which would have not been her original wish. She was in a morphine induced coma okay have to stop as it dredges up way to much.

Death and dying, can't be avoided but I have never met anyone who has said, "sure, I want to die a painful death from Cancer." Am sure Mimi would have many thoughts as well.
Thanks for all the great insights and opinions. What a great discussion.
stacy

[indysteel]

((((Sky King)))). I'm so sorry about your mom. And hugs to anyone, most especially Mimi, who has or is facing end of life issues.

Like I said, the New Yorker piece has provided me much food for thought, not the least of which is what role, if any, I should play in helping a loved one dealing with a terminal illness one way or another with end-of-life issues. We are so conditioned to support the "fight" against cancer (as a for instance) and to remain positive and hopeful. It often seems terribly insensitive to even hint at anything but success or to discuss the possibility/inevitability of death in anything but the most abstract of ways. But as the article so eloquently points out, there are other discussions worth having, discussions that medical professionals aren't always initiating or facilitating. How can we lovingly and sensitively broach these subjects with someone? I feel inadequate when it comes to truly helping someone, beyond the usual "you're in my thoughts and prayers."

[Wahine]

I may have linked to this before, but this article from the New Yorker gave me much food for thought when I read it.

Thank you for that link. It was hard for me to read having gone through end of life decisions with several family members. But it also made me feel really good that I never let people skirt around the reality. I was the only one that my father spoke to straight up about dying. It was because I didn't avoid the topic. I had a cousin whose children did not want me around because my realistic "views of her cancer were not helping" and yet it was me that my cousin most wanted to discuss things with. I hope that someday we can all face our mortality in a way that let's us choose how hard we want to fight.

ETA: I have a patient right now who seems to be stuck in the denial of death and is being swept up in the forces of intervention. That article makes me want to call her up and ask her what she really wants. What does she really see happening? I know her family won't do it. They are way to invested in the idea that accepting terminal illness is failure somehow.

[Crankin]

While I am pretty sure I wouldn't get mad if someone asked about this stuff if I had a terminal illness, I will be blunt and come out and say that I hate even thinking about death. It scares the sh!t out of me, even just normal die of old age death. I don't even want to get old, frankly.
I come from a family of hypochondriacs and I've dealt with this by ignoring death completely. Most people on both sides of my family die at around 90. There's been few "bad" diseases, save for my mom. My dad has had prostate cancer for 25 years. He's 87 and still quite active. On the other hand, I've dealt with death of others (including my first baby) stoically and been fine. In fact, people accuse me of being "cold" about the subject.
I've had some tell me I have this attitude because of my religion.... sigh. Like if I was waiting for my eternal reward, I would welcome death.
In the end, I doubt I would want heroic measures if I was in the state of the people in the article. I know my DH has strong feelings about no intervention.
I hated that article when I read it in the magazine and I didn't like re-reading it, either. But, I read it.

[shootingstar]

I knew my partner's mother well for over 16 years before she died.

At her wishes, she was cremated. So when my partner had to transport his mother's ashes to her desired resting spot in Ontario....he packed his panniers and included the urn of ashes. He rode up a 10% long hill and another hill to get to the airport to fly from Vancouver.

It was appropriate and poignant ....son-cyclist riding with the care and final weight of his mother's ashes on a long hill in a journey.... Ride with me in my journey, all the way to say good-bye.

I do have the photo of him climbing the hill on a sunny fall day on his way to the airport. I hope as cyclists here you are not freaked out.

[Amira]

I knew my partner's mother well for over 16 years before she died.

At her wishes, she was cremated. So when my partner had to transport his mother's ashes to her desired resting spot in Ontario....he packed his panniers and included the urn of ashes. He rode up a 10% long hill and another hill to get to the airport to fly from Vancouver.

It was appropriate and poignant ....son-cyclist riding with the care and final weight of his mother's ashes on a long hill in a journey.... Ride with me in my journey, all the way to say good-bye.

I do have the photo of him climbing the hill on a sunny fall day on his way to the airport. I hope as cyclists here you are not freaked out.

Freaked out? No, that is so beautiful and appropriate and loving. My 48 year old brother passed away very unexpectedly in March 2011. He was a professional snowboarder and adventurer and he was living and training and coaching in Tahoe at the time of his death. We had him cremated; in part, my sister and I were sure that was what he would have wanted and, second, in more practical terms it was the most reasonable and economical way to handle things. He was a free spirit and, while I know this was unconventional to my 80-something parents, we divided up his ashes and gave small amounts to many of his friends, who have taken him to all the mountains he loved and the beaches he surfed all along the Pacific Coast. Friends took him to special, meaningful places they shared and a few took him to places he wanted to go - including Alaska, New Zealand and the summit of Mt. Kilimanjaro (on his 49th birthday). I had a friend take some to the first place he loved in the mountains - Philmont Scout Camp in New Mexico. He's at Mt. Hood, in the terrain park they named for him. He's at Vail, in an out of bounds area we ski by and 'talk' to him. I 'took' him to the snowboard nationals (two weeks after he died) and again this year, leaving some ashes at the finish line of his favorite event and under the podium. I'll take him back next year, as his friends will compete in his favorite event to mark the last year he would have been eligible to race in that age class and he'll be at the start line, finish line and podium. He even rode around Tahoe with my sister and I two weeks ago (in our seatbags) and, knowing he never met a finish line he didn't like, we left him at the finish and in the lake. I still have ashes that will go on 'adventures' with us for a long time. It may seem weird, but honestly, it's been pretty cathartic to think of him out there in the places he loved. I hope someone will do that for me one day. I cannot imagine a conventional funeral any longer.

[zoom-zoom]

He even rode around Tahoe with my sister and I two weeks ago (in our seatbags) and, knowing he never met a finish line he didn't like, we left him at the finish and in the lake. I still have ashes that will go on 'adventures' with us for a long time. It may seem weird, but honestly, it's been pretty cathartic to think of him out there in the places he loved. I hope someone will do that for me one day. I cannot imagine a conventional funeral any longer.

I love knowing that you guys did that, after the fact. What a beautiful day it was to honor your brother's life like that.

I also plan to be cremated. Hopefully my loved-ones who are here after I pass will do something cool and meaningful like you guys have done for your brother.

[Amira]

I love knowing that you guys did that, after the fact. What a beautiful day it was to honor your brother's life like that.

I also plan to be cremated. Hopefully my loved-ones who are here after I pass will do something cool and meaningful like you guys have done for your brother.

I used to joke that they could scatter my ashes in the planters overlooking Neiman's shoe department, but seriously, I want to be scattered around like my brother (and in fact, in some of the same places...Tahoe and Vail among them). I figure he can come do the JDRF rides with me for years to come (I still have probably half the original container of ashes left). And, given that he had 413,660 miles on his 'super truck' when he died, I suspect he'll be cool with going to lots of different JDRF ride locations. The man did like to go places.

Talk about a surreal moment .... getting a Priority Mail box delivered to your office with ashes in it. I was taken aback at the heft of the box. My brother was so lean - imagine Lance, only about 3 inches shorter. But that box was heavy. I just kept looking at that box (through giant tears) and realizing that he HAD his priorities in the right place - I've never met anyone who lived life like my brother did. He loved what he did with a passion and he was a doer and adventurer. He left an unbelievable legacy of friends and memories and stories. He never made diddly squat monetarily, but he was the richest person I know in more important ways.

I so relate to the past few pages of posts of dealing with elderly relatives and diminished abilities, because that is my reality at the moment as well - my parents, my in-laws, my remaining aunts and uncles....and struggling through the right decisions for care, maintaining independence as long as possible and quality end of life decisions. You mourn the small losses of independence and faculties before the end, and, in the end, I expect that the loss of a parent is profound and deep, but it is a different loss entirely than that of a sibling. In our own way, we're found a way to cope and move forward (you never really get over it, though, it's something in your mind daily) and try to build something positive.

Hey, zoom-zoom, if I'm around and pedaling still, happy to have you 'ride along' on my bike one day. I hope people will do that for me, too. Think of all the great destination rides to come.