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A Protocol for Dying

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Re: A Protocol for Dying

#341

From personal experience, I can very much relate to and agree with this piece. My father went through a similar process: cancer (melanoma) – two years of treatment and coming to terms with the facts – euthanasia. As a family, we have been very matter-of-fact about it, which was definitely something he encouraged and participated in. We frequently talked about all aspects of his disease, the future, how it affected hi…

Revolting. I protest against suicide, the "assistance", the approval, and the very idea that it could somehow be eu (good).

Luckily, nobody cares what you think.

Re: A Protocol for Dying

#342
Thank you, Pieter. This brings up my 80 year-old father's death by cancer 8 years ago. The end came less than two weeks after the diagnosis, despite the doctor estimating 3-6 months.

Having flown halfway across the USA, I was fortunate to be there for his last two hours, unlike one brother, who arrived a day late. I wish I had come with happy memories to share, but the suddenness and shock of seeing him holding on by a slender thread obliterated such thoughts. I took over for the at-home hospice nurses and ministered care according to his heart and respiratory rates.

My mother had prayed in the next room, "Lord, take this good man," and it was obvious that his end was imminent.

Oddly, my experience felt similar to seeing the Twin Towers burn from a mile across the Hudson River. My eyes were riveted to the inferno until I turned to look away, then magically believed that when I returned my gaze everything would be right and intact.

Dad's eyes never opened, but his expression brightened when I said, "Dad, it's Dave." After hearing my mom's prayer, I busied myself with his nursing care, but was stymied about what to say. I had already told him the most important things on the phone after hearing the news from him that he was dying without regrets. He was lucid and conversant then. Now, he was teetering between states of coma and listening heart.

When my mother stepped into the hallway outside their condo, I counted his respirations – 32 per minute – and gave him a dropper of lorazepam, as directed. I said to him: "I can't ask you to stick around." I wanted him to know it was okay to let go but had no other words to say it. Facially, he shrugged. Thus did he begin his final retreat. I called my oldest brother and his son into the room and we called his name as he drew his last breaths. When Mom returned it was all over.

I still wonder, if I had come with loving memories to share, would he have held on through the night and into the next morning, long enough for his middle son to say goodbye?

It could be my life's project to write about my father, but my life has too much urgency to reflect so long on the past. Maybe things will settle enough for that in the future, but not now.

I am grateful for your valuable experience and will explore your writings. You are helping your family and others with everything you've done. I believe you are having a marvelous adventure.

David Forshtay

Re: A Protocol for Dying

#344

Are you getting fully sequenced before you die, so if there are discoveries later, your kids will have a database of you to compare against? Apparently the cost finally dropped below $1kUSD this year

Hahaha... oh wait, you're serious? I think, and hope my kids will slowly forget about me except as deep and positive experiences, and it would be narcissistic in the extreme to ask them to carry my DNA around like ashes, just in case. None of us are that special, me certainly not. Life is for the living, not the dead.

I 100% am.

I hope you don't mind this sir, but I am going to email you why, since I don't want a long explanation of my medical data on hn alongside feelings about my family.

I still think it is something you should hear before you pass

Re: A Protocol for Dying

#345

Earlier quoted context omitted.

Hahaha... oh wait, you're serious? I think, and hope my kids will slowly forget about me except as deep and positive experiences, and it would be narcissistic in the extreme to ask them to carry my DNA around like ashes, just in case. None of us are that special, me certainly not. Life is for the living, not the dead.

I 100% am. I hope you don't mind this sir, but I am going to email you why, since I don't want a long explanation of my medical data on hn alongside feelings about my family. I still think it is something you should hear before you pass

Thank you for your email, and I realize what you meant now. Sequencing my DNA to protect my children from the risk that my cancer has a genetic basis... very thoughtful.

Yes, I'd do this if I could find a researcher willing to help, and if I thought my disease had a genetic basis. As it is, I've put it down to "dumb bad luck" and there's no sequencing that.

I'll explain: my family has no history of cancer. We tend to die from natural causes, not too late, not too early. I'm unusual. The cancer originally in my bile duct is also extremely rare in Europe and America. Yet it turns out to be a main (if not the main) cause of death among 50+ males in certain east Asian countries.

So it's (almost certainly) a liver fluke carried in raw farmed fish, which is slipping into the global trade as "sea fish" and being used in cheap sushi restaurants. The fluke attaches to the bile duct and produces carcinogens because it likes feeding off the tumors.

The bad news is there are going to be a lot of western men in their 50s who get dramatically bad news out of nowhere, as this parasite must now be lodged in tends of thousands of us. Good news is this killer will finally benefit from some real attention, to the benefit of all.

Interestingly, women are almost entirely unaffected.

So while sequencing my DNA wouldn't help much in my case, there is one message I'd like to send to the world: "Stop eating fish. Fish is shit." One should not be eating wild proteins anyhow. It's unethical IMO.

Re: A Protocol for Dying

#346

Earlier quoted context omitted.

Hahaha... oh wait, you're serious? I think, and hope my kids will slowly forget about me except as deep and positive experiences, and it would be narcissistic in the extreme to ask them to carry my DNA around like ashes, just in case. None of us are that special, me certainly not. Life is for the living, not the dead.

I don't think they're talking about having your kids 3d print a clone of you using your dna, but about having medical info available in case your cancer is hereditary. You seem to be into giving your body to science, so it's not a crazy suggestion.

You're right, and I was wrong. Thanks for the correction.

Re: A Protocol for Dying

#347

Earlier quoted context omitted.

I 100% am. I hope you don't mind this sir, but I am going to email you why, since I don't want a long explanation of my medical data on hn alongside feelings about my family. I still think it is something you should hear before you pass

Thank you for your email, and I realize what you meant now. Sequencing my DNA to protect my children from the risk that my cancer has a genetic basis... very thoughtful. Yes, I'd do this if I could find a researcher willing to help, and if I thought my disease had a genetic basis. As it is, I've put it down to "dumb bad luck" and there's no sequencing that. I'll explain: my family has no history of cancer. We tend to…

As someone with the last name of Carp, I agree you shouldn't eat me! :p

(I had to make the joke,sorry)

I want to agree with you about "dumb bad luck." Unfortunately, your description of why turns the science question gears in my head if there is an epigenetic or genetic or a mixture of both (especially since this appears to be X linked? testoterone level linked? something along those lines?) What about maleness matters that leaves women nearly unaffected? Are there certain men more likely to be affected given that sushi has been around for like 30 years in the west, in some places longer, and the rates haven't risen dramatically yet.

And while on the surface it sounds like you have an awesome family tree, many people's families underdiscuss their family health in their family trees (mine is unusual in that we don't). In some cases old documents are misunderstood in terms of cause of death (eg: consumption used to be a thing) I don't know your family dynamics well, especially 5 generations back. Having an actual copy of your DNA in a database (and having a copy of your medical records in a super ideal world in safety deposit box for when they are older for essentially the same reason), basically ensures against questions later.

besides, you also have no idea what good genes/epigenetics that you never got to take advantage of that got passed down. Same probability principles hold, and as overall sequencing costs go down for the general population, there will be research in that area as well, and they might be interested in that as well

And you should really tweet about the fish - I actually didn't know about the parasite :/

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