[darthclue]

Jonathan here. Being woke up by my wife crying because the donations just aren't stopping is both heart-breaking and comforting.

For those of you who haven't seen the 'Bucket List' post, here's what it says at the very top:

As I try to deal with the reality that is my impending death I can't help but wonder how many things I might have been able to accomplish given just a little more time. When I was diagnosed, I had only one thing that I wanted; to live long enough to see my children grow up. The reality is that the odds of me living long enough to see my children grow are quite slim. The only available treatment will eventually stop working and then it's just a matter of time.

This is the list of things that I want to accomplish while I still have time. Many of them aren't for me. They are for my family. They are meant to provide security for my wife and kids so that they can celebrate my life instead of mourning my death when that time comes.

My priorities are taking care of my family just as they always have been. Sometimes, we just can't plan far enough ahead to deal with something like this. If you saw the original page you would also note that Trips and meeting celebrities is not high on my list of priorities. Those are things that would provide me with a small boost on an emotional level but I don't consider them something that must happen before I die.

Life Insurance: I changed jobs and don't have any and now that I'm terminal, the cost for obtaining it is prohibitive. I agree that this is poor planning on my part, however, I'm 35 and no one expects to find out that they are going to die at 35. We all think we have plenty of time and the reality is that we don't.

Health Insurance: Thank god that I have this or we would've been sunk from the beginning. Despite having insurance, there continue to be ongoing costs and once I go on long-term disability I'll be paying cobra rates to keep the same coverage. I have no idea how expensive this will be but I don't expect it to be cheap.

This really isn't about me or the money, this is about my family and trying to ease their pain. I know that I'm living on borrowed time right now and I could be dead at any moment. All I want to do is spend as much time as I can with my kids so that they know I loved them. You try telling a 6 year old that her daddy has cancer and will be dead before she turns 8. Hardest thing I've ever had to do and I would never wish it any one.

For those of you that have helped us, thank you is not enough.

[300bps]

I was happy to make a donation. This hits close to home because my wife was diagnosed with Stage 0 Melanoma-in-situ when she was 35 years old. We have three kids of our own and imagining them growing up without their mother is terrifying. Fortunately, we caught it at Stage 0 though which has a 100% cure rate. So let me stand up on the soapbox for a minute:

Everyone should go to a dermatologist every year for an all-over skin check starting when you're in your 20s. That's what my wife did and it's what I started when I was in my late 20s. It's literally the difference between dying young and growing old.

To stay on the soapbox for a minute, everyone should really have at least $500,000 in life insurance when your wife is pregnant with your first child. I pay about $1,500 per year for $2.0 million in life insurance above what my employer supplies me (3x salary). You really, really need term life insurance outside of what your employer offers. Just think - if you get very sick and lose your job, you don't want to lose your life insurance as well. Don't get whole life - it's generally a rip off. Just get term life insurance. I have a ladder of 10 year, 20 year and 30 year policies that expire as I get older and need less life insurance. In fact, my 10 year term policy just expired a couple months ago (my oldest son is 9.5).

Also, get disability insurance outside your employer's policy as well. Policies supplied by employers are typically worthless. It's generally good to get an "own occupation" policy because otherwise you can be denied payment because you're able to work a McDonald's drive-through even though you've been a surgeon your entire life.

[sbhere]

Yes. This. The dermatological point is very, very helpful, but the rest of it is a grand-slam home run.

The sadness of early death is something way too many people have to embrace ... but there is also an element of preparation. For all the articles about preparing for a proper launch, preparing for VC, preparing for #whatever on HN, this is an element glossed over in most every circle I have ever been in.

To everyone: Get Term Life Insurance. To everyone: Get Disability Insurance.

Do your research, and be prepared - because life is coming regardless of your level of preparation.

[franl]

Great points all around, thank you for making them! Please don't help perpetuate this myth about whole life being a "rip off" though. Your statement is semi-accurate, but a bit misleading.

Don't get whole life - it's generally a rip off

Yes, if purchased from a non-mutual, financially shaky insurance company, it's quite likely a bad idea.

However, when purchased from a financially strong mutual insurance company (Northwestern Mutual, Guardian Life, etc.), it can make a great complement to term life insurance (and can be beneficial to the overall financial plan for a number of reasons).

One wouldn't want to "fully" insure themselves with whole life (that'd be cost prohibitive and inappropriate from an asset allocation perspective), but again, as a small piece it can make a lot of sense.

Anyway, didn't mean to detract from your overall points. It's hard to put a specific number on peoples' insurance needs without knowing their situation, but the spirit of your points was spot on. Especially about "own occupation" disability coverage - which I think is especially relevant for programmers.

TL;DR on insurance: Talk to a professional that you trust, figure out what amount of protection makes sense, and get protected. Term life insurance is an affordable way to get a lot of financial protection for your family. Your ability to earn an income is perhaps your greatest financial asset (edit: assuming you have many working years ahead of you), so treat it as such. Think about protecting it with disability income insurance.

I'm heartbroken every time I read one of these deeply personal stories. The situation is already stressful enough - one shouldn't have to worry about how the family will keep the lights on.

[Source: I once worked in financial services]

[300bps]

I'm in IT but I am also a CFA charter holder (Chartered Financial Analyst). I disagree wholeheartedly on your assertions on whole life. I have only seen whole life be an appropriate investment vehicle for very wealthy families that are doing estate planning. There may be other times where whole life is appropriate but I don't know what they are. In almost all circumstances someone would be better off buying term insurance and doing their own low-fee investing somewhere like Vanguard or Fidelity. They've made it so simple with Target Retirement funds.

[khafra]

> There may be other times where whole life is appropriate but I don't know what they are.

$80,000 for cryonic suspension, which is most likely to be successful if you die of a terminal illness; which is most likely to happen when you're old enough that term life insurance is ridiculously expensive (but could happen when you're young, which is why to go whole life instead of just investing and then paying up front for the suspension).

[300bps]

If term life insurance + self-invested funds nets more money than whole life insurance then it is better to buy term life insurance and self invest your funds.

The problem with whole life are the massive profit the company takes and the massive commission the salesperson takes. If:

A represents the value of a term life policy after costs

B represents the value of investing after costs

C represents value of a whole life policy after costs

In all circumstances I've evaluated but one, A+B comes out ahead of C. The only circumstance where C has a chance of coming out ahead from what I've seen is as part of an estate plan to minimize taxes.

[franl]

Based on your comment, I know you won't be swayed, so I won't argue :) My point was simply that allocating a small percentage of your money toward a WL policy can make some sense because it's such a flexible financial instrument (tax-deferred growth, tax-free withdrawals, policy payments made in the event of disability, a small but reasonable tax-adjusted return, permanent death benefit, etc.).

If/when I get married, my plan will look like this: majority of life insurance via term, modest WL policy, disability income insurance, some index funds, and some stock of two or three companies that I know deeply.

What happens to folks who retire after a crash like in 2000? It'd probably be better if they left their investments alone, and instead drew some money from their WL policy. You could argue that their allocation should've been well tilted from equities at that point, but what if it wasn't?

In a perfect world of automatic 10% yearly returns, and diligent saving/investment, buying term and investing the difference (from WL) would smack the performance of WL. Unfortunately it doesn't work like that. Most people don't save/invest diligently, and the market isn't automatic.

[gbhn]

Definitely unbundle your life insurance and investments. The only reason I can think of for coupling them is just shy of fraud.

-- someone who once got sold a whole life policy

[franl]

Out of curiosity, which insurance company was it? How long after getting the policy did you cancel it? What made you cancel?

[x0x0]

I'm the son of a parent who died well before I graduated high school. I hate to say it, but $500k isn't nearly enough unless you're in a very low cost of living state. Even if the surviving parent makes a good wage, you will have a surge of childcare expenses. And if the surviving parent wasn't the primary earner that's when you really need the insurance. The thing lots of people don't consider is that you may not die from a car accident where shit just happened. If someone should be unlucky enough to get cancer, you may face several years of illness with not only reduced income or disability pay but an astounding amount of money spent on medical treatment. Just for starters, insurance will not cover eg childcare for young children while parent #1 is sleeping at the hospital while parent #2 is recovering from surgery or chemo or radiation or whatever it may be.

From my experiences as the oldest of several kids, $1mm is really the minimum and it's worth a quick talk with an attorney to not only have (1) a will; (2) a written discussion ahead of time of what you want to have happen if you or your SO should ever be severely injured (see eg the Terri Schiavo debacle); (3) a discussion of who you would like to have raise your kids should both parents be injured; (4) tax avoidance strategies should someone die early.

These are all unpleasant things.

The other thing you may find shocking is how long it takes to get a death certificate issued / the challenges getting access to accounts held only in a single name. Maybe our experiences where unusual but you should not be surprised if it takes 3-6 months to get some of these things sorted. Not to mention the surviving family are usually an emotional wreck.

[skittles]

I think the better message is to think about what would happen if you or your spouse died or couldn't work. There isn't a one-size-fits-all plan. Someone with a $500,000 mortgage, $50,000 in other loans, and no real nest egg needs more than your recommendation. Someone with a spouse that makes a good income, has very little debt, and having a substantial nest egg may not need any life or disability insurance. The key is to be realistic with your situation.

[tungwaiyip]

Best wishes to Jonathan. I've chipped in my little bit.

Agree about the importance of getting term life. One thing to add, the Internet (or the society) is a life insurance! Help some one in need. One day the karma will come back to you.

[karmajunkie]

Jonathan, my heart truly goes out to you. Someone very close to me was diagnosed with stage 3 melanoma a few months ago, so while I can barely imagine what it must feel like to face this, I do know what the medical picture looks like and the information available looks grim.

I don't want to tell you about your disease, but if you haven't yet, please find a way to get evaluated at md anderson. They're in Texas, and possibly the best (at least top four or five) place in the world to be treated for melanoma. And they're one of three hospitals in the country with trials ongoing in TIL therapy (sometimes referred to as ACT), which, having done as much research as a lay person can do, seems to the most promising avenue of treatment with long term response rates as high as 70%.

And just to give you some hope, as horrible a diagnosis as you've been given, there has never been a better time in history to receive it. There are literally new treatments coming down the pipeline every few months.

[darthclue]

I am hopeful that I live long enough for the next great breakthrough to happen. The treatment that I am on didn't get FDA approval until late 2011 and is actually working to shrink the tumors. Unfortunately, they don't know where mine originated and it has progressed so quickly that they don't give me good odds. I literally went from being fine one day to having cancer the next. There were no external signs and the internal tumors are huge, ranging in size from golf balls to soft balls.

I have hope but I'm also being realistic based on how my treatment has progressed. I have to plan for the reality that I may not have more than 9 months and hope that I'm still here in 15 years. It's a very difficult place to be emotionally.

With regards to MD Anderson, I've heard great things from them, however, I trust my doctors and they work with many of the doctors from MD Anderson. Before they did my gamma knife treatment they actually sent the MRI results over to a neuro-surgeon peer group to ensure that the right actions were being taken. They have taken no chances and are doing the right thing as far as I'm concerned. I continue to do my own research looking for the next best thing and will definitely consider MD Anderson should I find that they have something better available than the treatments I'm on.

[jreed91]

I'm glad you mentioned this. My father just recently passed away from this terrible disease. But if this was just a few years ago he would of had almost zero treatment options. So many new treatment options are coming out. Be sure to get with a specialist they are the only ones who really understand this disease. Also look into PD-1 inhibitors they are only in clinical trials but have shown a lot of promise as well. Stay strong you're not gone yet and even though it might seem like it's the end, it's not.

[glaugh]

As of yesterday, PD-1 drugs are now available for compassionate use, too: http://smh.com.au/national/bittersweet-victory-for-save-lock...

They have pretty absurdly high success rates.

[karmajunkie]

and it was only a couple of months ago that BRAF and MEK combo therapies were FDA approved... after decades of melanoma being a diagnosis without a lot of hope, the last couple of years have seen some really amazing advances.

[sonnyz]

If you can make it to Florida I can take you and your family to any of the four Disney parks, at no cost to you. I can't find your email address anywhere, but if you can provide it I'll send you my info so that you can reach me if you do decide to come.

[runjake]

It's listed on his professional website:

[e-mail] https://jonathandale.com/

PS: Very cool of you.

[sonnyz]

Thanks, I'm emailing him with details now.

[simonebrunozzi]

Very nice of you.

[darthclue]

sonnyz, this is very generous offer. I didn't hear from you but you can also reach me at [e-mail]

With regards to making it to Florida, I don't that this would ever happen even if someone stepped up and covered the cost of the entire trip. With my current health, every day is an unknown. When I got up this morning, I had no idea that I'd end up in the ER yet again nor that I'd be so exhausted I'd come home and sleep for several hours. This has become my unfortunate reality. Even if it was an all expenses paid trip it would likely kill me before it was over and it is for this reason that I consider this to be near the bottom of the bucket list. It's more for my kids than it is for me and it's meant to provide them with happy memories that will hopefully sustain them through my death. That said, if we make it to Florida I will at a minimum be in touch just to say thank you.

[surge]

As someone who was diagnosed with cancer back in August at the age of 33, I can relate, thankfully, it was easily treatable, testicular cancer that by all appearances had not spread. I literally gave my left nut to get rid of it.

That was the only thing that really bothered me too, having a, at the time, 8 month old daughter who I might not get to raise. That of all things was my greatest regret and fear.

I had terminal life insurance already to cover loss of income and pay off the mortgage, etc. I'm not saying this to you, nothing you can do about it now, but people if you have a family you care about that relies on you for their well being in anyway, even if its just child care, and extra income, etc. Get some life insurance, insurance is for exactly this reason, highly unlikely events, but events that are financially devastating all the same.

[kaiuhl]

As someone who was also diagnosed with skin cancer recently and who's mother is dying of metastatic cancer, I can particularly relate. It's amazing that simply being told you're sick can physically make you so. If you want someone to talk to, I'm available. Contact information is my profile. Good luck.

[darthclue]

I wouldn't say that it's made me physically sick. I am physically sick but it's the emotional toll that is the worst. Just knowing that this body is dying and there is nothing I can do is frustrating and when I consider what it means for those around me I become an emotional wreck. I could care less if I die, but I do care about what it will do to my wife, my kids, my mother, my grandmother, my aunts, uncles, cousins, close friends, even complete strangers who took the time to send me $5 and a few simple words of encouragement. These are lives that I've touched in some way and my death will impact them. Some more than others but it will still impact them. Doing what I can to lessen that impact and make it a more positive experience for them is the least I can do as my final act of thanks towards humanity.

[eranation]

I'm praying for you, but besides praying, your post has triggered the following:

1) cried a little, I'm your age, with kids, wife had Thyroid cancer, close to home

2) donated to your fund, hope many more will

3) read about Melanoma, was shocked how much I didn't know

4) made an appointment with a dermatologist, I'm in the risk group apparently

5) emailed my insurance company to increase my coverage

My thoughts and prayers are with you

[clusterfoo]

> 3) read about Melanoma, was shocked how much I didn't know.

Yeah it's weird how little people know about something so prevalent. People are shocked to find how many different types and sub-types of cancer are out there and how different the prognoses vary from one to the other.

I just got the diagnosis a month or so ago (26 y/o, a year after my dad dies of lymphoma... epic wtf's all around).

First response is "Oh, well at least it's only skin cancer. They just cut it out and you're good." -- heh... NOPE.

Also, I was walking around with it and a lump in my neck for months because Dr. said it was only a birthmark, probably just scarred node, etc. Until I pushed for a dermatologist.

tl;dr: Get checked. Be paranoid. Don't take "you're young, it's nothing" for an answer. Demand a biopsy.

[eranation]

I hope you recover quickly and that everything will be fine! My condolences on the loss of your father. I'm always paranoid, this is why I used to avoid being checked :)

[petenixey]

I donated earlier today and I wish you the very best.

Please also don't feel bad about taking advantage of this opportunity at the top of Hacker News and add a clear link in at the top of your blog post saying "You can donate here".

It's hard for someone scanning to see that they can donate and while there's a time and a place for being shy it would be a shame to lose out on the opportunity you have here.

Very best of luck (and please do clearly add the link) Peter

[adventured]

Is there anything people can do to help further beyond donations? Anything your family needs?

[darthclue]

Our basic needs are taken care of for now. We have a strong group of friends and family who have been by our side throughout this entire mess and provided us with indescribable support. Spiritual support of any kind is always welcome.

[sdegutis]

I don't have a lot to give. But me and my wife and our four kids pray together every day, so you can be assured when I say that we'll include you in our prayers. We'll pray that God comforts and guides you and your family through this unimaginable time, and that He reunites you with your family in the next life, with never ending happiness.

[chrisweekly]

In re: spiritual support, may I recommend "How to Want What You Have" http://www.amazon.com/How-Want-What-You-Have/dp/0805033173 which taught me to live in the moment when I was faced with my own seeming impending demise.

[I'm 39, have daughters aged 5 and 7, and had a fist-sized brain tumor removed just over a year ago. So, though I'm doing fine right now (next MRI is tomorrow morning, hoping for another clean scan), I can certainly relate.]

If you have the strength, try to take up running. My world-class oncologist (at MGH in Boston) said he wished all of his patients were runners. Not occasional joggers, but real runners as in 3 to 5 miles multiple times per week.

Also avoiding refined sugars and red meat can't possibly hurt and there's a lot of evidence that it can make a huge difference.

More generally, I urge you to fight to stay alive. Anything is possible if you just hang on and keep alive. The pace of innovation and understanding in medical science is accelerating, and “incurable” diseases have been eradicated. HIV was once a death sentence; now patients live about as long as never-infected people. Just keep breathing, and hang on. Positive change is coming.

Sending all my positive vibes and loving best wishes your way. I know you're inundated with messages from strangers but if you read this and want to talk or I can do anything for you, please do reach out. I'm "cweekly" on twitter and gmail.

Love, Chris

PS This excerpt from Alan Watts -- "Think of Nothing" -- also helped me cope, when I thought my end was near. If you're a devout Christian you might find it offensive, but I (a humanist with zen buddhist leanings) found it comforting. http://www.youtube.com/watch?v=aQ5upMz0_ig&index=35&list=FLf...

[darthclue]

I wish I had the strength. As it is, I'm so weak that I can't even get upstairs to my own bed anymore. This is one of the most difficult things that I've had to accept is physical limitations. I've always been able to do physically challenging things that included running, although I'm horrible at it, and moving furniture around when needed. Now? I can barely lift my laptop and we won't even talk about the need to use an electric cart at the store now. It makes me feel weak and feeble despite mentally knowing I'm too young to be this damn old.

And I intend to fight until I have nothing left. I refuse to just give up and die. It's not in my nature.

[mastersk3]

Hey Jonathan do not worry, slowly things will fall into place. I wish you luck and pray for you and will also curse this unfair world for you. Stay strong and instil your little ones with confidence and happiness. Take care.

[thro1237]

A question about insurance. If you join a new job, typically you can have yourself insured without answering medical questions upto 2-3x your salary. I don't know how your health is right now, but it might be something to keep in your mind.

[gnaritas]

What does that matter at all; it's no longer legal to discriminate based on pre-existing conditions. He can simply sign up with any insurance company, they cannot turn him down because he has cancer. Obamacare solved this problem.

[dllthomas]

I have no idea if the parent is accurate, but I understand them to be talking about life insurance, not health insurance.

[thro1237]

yes, I meant Life Insurance.

[gnaritas]

Oh, my bad then, never mind.

[Aloha]

You implied you're in Texas - you may wish to look into natural burial - I don't know where in Texas you are - but I was considering it for myself.

http://www.eloisewoods.com/index.html is one option - but there are many others - it comes with the advantage of being much cheaper - you could even dig.. well you know.

I hope you beat it dude, I really do, I'm 31 - 4 years ain't that much.

[kroy]

Hey Jonathan, just donated.

Have you or your doctors discussed the possibility of getting you on Yervoy (AKA Ipilimumab)(https://en.wikipedia.org/wiki/Ipilimumab)? It's an immunotherapy drug indicated for the treatment of late-stage, metastic melanoma.

I'm not a doctor, so I don't know if Yervoy could help you or not, but I figured I'd mention it just in case.

[yawz]

My mom recently got diagnosed with a terminal illness. This was a very sad eye-opener for me. Having lived that in the family it has made me think about many things and how suddenly life can pull the rug from under you. I can say from my own experience that being happy and enjoying every day as much as you can are the best gifts you can give to your loved ones. My heart goes out to you and to your family.

[beingpractical]

Almost at tears reading this. If I have to die today, the most painful thing will be seeing by family going away from me, and most importantly my precious daughter who is just few months old now.

I run a startup (around wishing & bucket-list) and I keep telling folks - life is short, fulfill every wish you have. Be strong bro, that is all I can say now.

[chaostheory]

> I'll be paying cobra rates to keep the same coverage. I have no idea how expensive this will be but I don't expect it to be cheap.

It's really expensive even for young, healthy guys. I would imagine this would be more than your mortgage payment.

[ChuckMcM]

I'm guessing the Obamacare rates will be much more affordable.

[darthclue]

ACA rates might be a little less but I wouldn't expect they'd be much less. The insurance I have via my employer is far superior than anything I can get from ACA at this time and resetting to an ACA plan would reset deductibles and out of pocket expenses possibly costing me more money in the long run. It's something I will be looking at when the time comes that I have to make that choice. Until then, I am thankful that I still have insurance through my employer which is reasonably priced and has paid out more than $280,000 to keep me alive for the last 2 months. Without it, I would most certainly be dead at this point.

[maaku]

You are missing a bitcoin donation address. I suggest fixing that.

[unreal37]

If this was a Wikipedia fundraising campaign, this would be true. But this guy is dying of cancer. He needs cash. Sell your bitcoin and give him cash if that's what you want.

[callmeed]

What part of NE Oklahoma are you from? My daughter grew up in Grove so I spent a lot of time there visiting her.

Praying and pitching in as much as I can.

[clarkm]

He mentions in the part about Casa Bonita that he's from Tulsa (which is also where I grew up).

[robinhoode]

Have you considered cryonics at all? This woman was diagnosed with a brain tumor, and funded her procedure with donations:

http://www.themarysue.com/woman-cryogenic-sleep/

[timcederman]

I'm fairly sure you mean well, but this is actually a pretty tone-deaf comment.

[kiba]

Why is it a tone-deaf comment?

[timcederman]

For most folks in this position, particularly with 4 young children, cryogenics is not exactly at the top of their priority list.

Cryogenics might be an interesting "hail mary" for someone without a dependent family, but it seems crass suggesting it in this context.

[rbanffy]

If someone has the resources, it may be a last-ditch attempt to elude death. It's very unlikely someone frozen today would be able to watch his or her children grow - we don't have the technology to revive a frozen person and we don't know if it's even possible.

Then, I understand the odds are probably better if I'm frozen while alive, with minimum damage to brain tissue. It would be a hard choice to give up my last few couple hours with my family in order to undergo an uncertain procedure on the slim odds of getting resurrected decades from now.

This hits home hard for me. My father found out he had terminal cancer when my mother was 3 months into pregnancy. In the late 60's he didn't even know I was a boy. Medical science couldn't give him anything better than a less painful death. He never heard me cry and never got to hold me in his arms. He would be no better now if he were frozen when he died - he'd still be dead and would remain so for at least a good couple decades. I'm 46 and, with luck, I'll have another 46 years to live. He died at 40.

[Dogamondo]

Why the hell is this comment not at the top of the page?