Some Basic Arithmetic for Dying

I'm a fan of the short stories of W. Somerset Maugham. It's been a long time since I've read them, but I recall one story in particular that I've been thinking about a lot lately, It's a story about a guy who quits his job, cashes in all his assets, and heads to the South Pacific. He calculates that with the cash he's accumulated he can live for three (or something) years, and when the money runs out he plans to swim out into the ocean and kill himself.

Of course when the money runs out he finds he can't do it. The story ends with him begging on the streets of some island village.

I forget the reasons behind the character's choices, but the calculations are becoming all too familiar. Here's the challenge: Calculate the appropriate day to give up my career given the following conditions:

a) As long as I work my income continues but as soon as I quit it stops. This, moreover, is a one-time decision. There's no going back if the money starts running out.

b) As long as I work I have life insurance with a value equal to one year's salary. Moreover, if I can get a doctor's certification that I have less than two years to live the insurance policy will pay up to 80% of the policy value while I'm still alive.

c) The cost of medical care is currently in the ballpark of $5,000 a month, and this number will likely only increase as my condition gets worse. Medical insurance covers most of this cost, but my medical insurance as a function of my job. Once I quit, I can continue the insurance coverage via COBRA by paying the premiums yourself but that option expires after eighteen months. 

d) I have money in my condo and retirement accounts -- both of which are hard to get at -- and a little bit of savings.

e) At some point the cancer will progress to the point that not only will I not be able to do my job, but I won't be able to do much of anything else either. 

So when should I pull the trigger on my career?

It would actually be a simple calculation if I knew exactly how long I had left to live, but not knowing that important variable is making it almost impossible for me to figure this out. 

The last thing I want is to wind up like the guy in the Maugham story, having burnt through all my resources only to find that I still have a long time left to live.

And having to think about all this is depressing the hell out of me. 

Any Guesses?

I was just on my health insurance web page and noticed that they'd begun processing claims for my recent visit to the SCCA, including the one for the first round of Xeloda.* 

I take eight 500 mg pills a day for fourteen days, so I received 112 pills. Any guesses how much the claim was for?

Three thousand seven hundred forty-seven dollars and sixty-five cents!!! I make that out to be thirty-three dollars and forty-six cents per pill. 

And if my recollection of the paper I read is right, and a six month regimen of Xeloda buys you three additional months of life, it would seem the approximate value we've assigned to that time is, at minimum, $30,000. 

Glad I'm not the one footing that bill, and it makes me a little sad for the people that are. Sorry everybody in my insurance pool!

But the sad thing is that I'd bet my end of life care will actually be less than a lot of people's. I think I read somewhere that about a third of what the country spends on health care is spent on people in the last six months of life, and working reasonably close to the health care industry I've heard some stories that would support that claim (as well as making you wonder what people could possibly be thinking). 

Good thing Sarah Palin put a stop to those "death panels." 

* I just learned I've been spelling this wrong; it's Xeloda, not Zeloda. Oops. But I'm too lazy to go back and correct the prior posts. 

Surprising Kindness

I'm not sure many people would describe me as kind, but that doesn't mean I don't recognize it when I see it. Recently I've seen two examples that have really stuck with me. 

The first example I've found on reality TV of all places; specifically, the show Master Chef Junior. I originally started watching because I was floored by seeing kids that are eight or nine years old preparing dishes I'd have a hard time making if I had an entire afternoon and access to the recipes on Epicurious, much less in the allotted hour using only the knowledge in my head. But it's the kindness on display that keeps me watching. It's your basic elimination show, but the kids are all generous and kind to each other. Perhaps more surprisingly, the chefs hosting and judging the program are all incredibly kind to the kids. When things go awry, they're there helping the kids get a grip on the situation, calming them down and getting them back on track to solutions. Even when they're sending someone home, they recognize what the person has already accomplished and make sure they understand the clear distinction between losing and loser. For a cheap reality show, it's a pretty great example of how much can be accomplished with kindness.

And speaking of pretty great, I read today about a Superbowl wager that qualifies. Apparently, Chris Pratt, the actor who played Star Lord, is from Seattle while Chris Evans, the actor who plays Captain America, is from Boston. So the two have agreed that if the Seahawks win, Captain America will make a visit to Seattle Children's Hospital,while if the Patriots win, Star Lord will visit Boston Children's. It's almost enough to make you wish it were possible for both teams to lose. 

And props to the two actors for turning something stupid like a Superbowl bet into something pretty terrific.

The Incredible Shrinking World

As you read about aging and dying, you can't get too far before you start to hear about the way people's worlds seem to shrink as they get older. I've read more than a few laments about how a parent who was once this outward looking person, constantly engaged with the travel, community, politics or whatever, winds up sitting on the couch watching the weather channel with little or no interest in any of the things that used to fascinate them.

I'm starting to think this dynamic has less to do with how far you've moved from the starting line than it does how close you feel yourself to be to the end. This is to say, I'm finding it harder and harder to give a crap.

There was a time when a speeding ticket would've really bugged me. I'd be worried about my insurance rates and the other downstream implications, but at the point it doesn't matter at all. 

There was a time when the idea of a (Jeb) Bush v. (Hillary) Clinton election would've driven me crazy. But at this point, if America wants to permanently install the two families in the White House on a rotational basis, why should I care? I won't be here to pay the price (or reap the benefits).

I used to love movie trailers, and see hundreds of movies a year. Now I can barely be bothered to look up what's currently playing. 

I don't think I'll fall over dead anytime soon, truly, but I am finding it harder and harder to convince myself I'll see fifty. And the less convincing I become on that particular point, the harder it is to maintain the belief that things that "matter" do, in fact, matter. And so the world keeps shrinking as I jettison my interest in the things I can't persuade myself to keep caring about.* The weird thing is that while I can objectively recognize that my world is getting significantly smaller, it still feels way too big. 

Good thing I've got the next leg of the GCW Tour coming up. Nothing like travelling to a place where you don't understand the language and don't recognize the food to help remind you that the world's actually a much bigger place than we generally think it to be. 


* I have this vague recollection of reading about animals who, when the fight or flight instinct kicks in, basically evacuate from every orifice to shed all unnecessary weight as they move to escape. It's starting to feel that dying might be like that. We shed all our crap -- mental and physical -- to lighten the load as we move to escape.

A Possible Addition to the Cancer Center Services

I think I've found a service the cancer centers don't offer, but should: manicures. I'm finding that the pill-based chemo is having two primary side effects. First, there's the neuropathy in my feet, which just gets worse with each passing week; and second, there's the complete destruction of my fingernails. 

The neuropathy I'm supposed to treat with a combination of cow creams* and anti-depressants**, but the best the staff at the cancer center could recommend for the fingernails was that I eat more Jell-o. 

I'm all for Jell-o, but I can't really afford to wait for the gelatin to make its way through my system to my fingernails. A more immediate solution is needed. In short, I could use a manicure.

The problem is, at this point there's not really anything left to perform a manicure on. I have clipped my fingernails as low as they can possible go, and yet they're still splitting and cracking. I've had to find a new place to keep my keys, as reaching into my pockets inevitably results in my nails splitting and tearing. 

But if the cancer center had a manicurist who could deal with your cracking, splitting fingernails while they were giving you the drugs that caused the cracking and splitting, that would be cool. 


* I'm supposed to rub "Udderly Smooth" or "Bag Balm" on my feet since the drug that causes the neuropathy settles in you callouses, which are both lotions ostensibly designed to sooth skin problems on cow udders.

** Don't get me started on the odd way drugs get repurposed. I was talking to a co-worker today who mentioned that he was given an anti-psychotic medication to treat hiccups that wouldn't go away. And given the way I'm feeling these days, I could probably use the anti-depressant benefits of an anti-depressant anyway, irrespective of what it does for my feet. 

Hey, Miracles Can Occasionally Happen

I've been disinclined to buy it when people tell me miracles ("of course they can cure your cancer") can happen, but if the Seahawks can play as bad as they did for three-and-a-half quarters of the championship game and still manage to pull out a win, perhaps I can manage to make it at least a far as 2016. Go Hawks (and cancer treatments)!

Industrial Medicine

Today was my first infusion at the SCCA. In its fundamentals, it was pretty much the same as an infusion at Group Health:

1. Check in.
2. Have line inserted and blood drawn.
3. Meet with oncologist or physicians assistant.
4. Get infusion.

But the details -- well, that's a different story.

By my count, GH had space to infuse twelve people at one time (assuming none of the chairs were being used to insert a line); at SCCA, I passed doors flagging infusion rooms numbered 50 to 71, and the infusion center was on a completely separate floor from the lab space where lines were inserted. There were so many potential infusion spaces I actually got lost trying to find mine until a very nice nurse saw me wandering and showed me to my spot.* 

If I was guessing, I'd say GH had maybe a few thousand square feet devoted to offices for the oncologists and patient rooms for infusions and what not. I'd bet SCCA has hundreds of thousands of square feet for the same purposes.

At GH, proceeding through the four steps above would involve interactions with seven people: infusion receptionist, nurse who inserted the line, oncology receptionist, medical assistant, oncologist, and then back to the original nurse for the infusion. At SCCA, I interacted with nearly that many in the first ten minutes I was there. I actually lost track of the number of nurses involved in my infusion.

This is industrial medicine. 

But when you get down to it, an infusion appointment pretty much boils down to waiting. You wait to see the lab nurse, you wait to see PA, you wait for the infusion space to open up, you wait for the drugs to be delivered, you wait for the nurse to hook up or change the drugs, and you wait for the pump to push the drugs up your line. Setting aside the side effects -- which are no longer much of an issue for me -- it's sort of like spending the morning at the DMV.**

This is to say, it's not how I'd choose to spend my time, but there are worse ways kill a few hours. I just wish the hot topic of conversation didn't have to be the nature of my bowel movements. 


* The nurse who inserted my line told me that they'd infused 400+ people yesterday.

** I didn't live blog this infusion as it was only Avastin which is supposed to take thirty minutes. Who knew infusion-time was like football-time and a thirty minute drip would take more than two hours?

Decency 0, Zealotry 1

I read today that the Connecticut courts have ruled that while an eighteen-year-old is mature enough to make decisions about their own healthcare, someone nine months younger can't understand the magnitude of such decisions. 

As a result, despite doing everything she can to communicate that she really doesn't want chemotherapy (up to and including running away), the poor girl who filed suit will be isolated and forced to continue undergoing chemotherapy -- at least until she turns eighteen and can legally tell the medical team to fuck off. 

Because we all know better how other people should live their lives...

Denial's Not Just a River in Egypt

You'd think that for a race of people as intelligent as humans mostly are we'd be able to recognize, acknowledge and embrace a universal truth like "we're all going to die." Based on my experience today I'd say that's a stretch. People seem willing to do just about anything to maintain the illusion that death is not an absolute.

I mentioned that my cancer diagnosis has generated some legal issues. Like most people, prior to my cancer diagnosis I generally operated under the illusion that death is possibly optional and certainly far enough away that I could reasonably ignore it. As a result, despite the fact that I'm currently divorced with no kids (and thus have no obvious beneficiaries or decision maker), I have no will, no document authorizing anyone to make decisions about my medical care should I become incapacitated, no documented instruction on what I'd want done to me in such a state, no stated preference on what happens to what's left of me* -- in short, I'm the kind of person that gives hospitals, lawyers and probate courts conniptions. 

But given that some thirty people a day die in Vietnam as a result of traffic accidents, it seemed prudent to try to get some of these documents in place before I head off for leg two of the GCW Tour lest I crash my motorcycle into an errant water buffalo or something. 

So along with contacting my retirement plan people, I also started the process to get the documents I need in place. I don't want to be unkind, but I have to say that as someone who can no longer reasonably maintain the illusion that I'm not going to die, it was somewhat humorous to witness.

First up was a conversation with the secretary at a law firm that specializes in estate planning and what not. She was very kind, and when she asked why I needed to consult a lawyer I explained that I had a terminal cancer diagnosis and so needed a complete portfolio of end of life documents. We then spent approximately ten minutes talking about the treatments I'd tried, why I didn't try the treatments I didn't try, and why I was reasonably sure the cancer was likely to kill me. The sense I got was that my telling her I was going to die was clearly interfering with her ability to maintain the illusion that humans aren't mortal and so our conversation was necessary to allow her to buttress those walls. She was lovely and kind, but eventually it got a little absurd. 

Then I made the mistake of sending a "who wants my stuff when I'm gone" email to my siblings which caused a major freak out. Sorry siblings! I was just trying to avoid a repeat of the weirdness that plagued the distribution of Mum and Dad's accumulated stuff. 

I wish I could find the perfect (minimally acceptable?) model for the dispersal of inherited property. As friends and colleagues have dealt with the death of their loved ones I've heard about a lot of different schemes, but I have yet to hear of an approach that didn't cause some heartache (or headache) for someone. 

But maybe that, too, is part of being human: we can't deal with the emotions associated with the loss of a loved one so we just fight over the crap they left behind instead. 


* For the record, I'd like to be cremated and have my ashes strewn across Little Makena, the clothing-optional beach on Maui. Maui is one of the calmest and pleasantest places I've ever been, and it amuses me to think of spending eternity under the feet of a bunch of naked beach-goers. 

I'm Not Much of a Gambler

A few years back I met with a financial adviser who lamented the adequacy of my retirement planning. As a result of that conversation, I promptly went back to my employer and had all my retirement contributions, which until that point were relatively minimal, upped to the maximums allowed under IRS law.

Oops. Turns out that's a pretty good plan if you live long enough to actually retire, but not such a good plan if you don't since if you don't actually retire you can't get at the money.

Now that we're in a new year, it seemed like a good time to start dealing with all the legal issues affected by my cancer diagnosis. Lacking any better place to start, I gave my employer's retirement plan folks a call to find out if I would be able to get at the money that's already there and to limit any further contributions. I learned that as long as I have my job and haven't reached the age of 63 or whatever, I can't actually get at any of the money in my two retirement accounts. Moreover, while I could technically withdraw at least a portion of the funds once I was "no longer a part of the plan" (i.e., unemployed), the taxes and penalties for pulling the money out prior to reaching the required age would be roughly 50%. 

(Dear Congress-people: You've written the laws that underlie the IRS regulations to allow for withdrawals under certain limited conditions. Perhaps a terminal illness diagnosis is another good reason to allow someone access to their retirement funds without assessing penalties? Just a thought.)

I don't really remember them telling me that at the time, but I know myself well enough to know I would've played the odds and done the same thing anyway. But given how things are turning out, I would've been much better off skipping the employer-managed retirement accounts and finding some other, personally managed and more easily accessible, place to put my money. 

But the craziest thing? 

Even though I told the financial people to reduce my 403(b) contribution to zero, I left the 401(a) as is. It just seemed wrong to not be contributing to a retirement account (and to give up the corresponding employer match), even though the likelihood that I'll ever see that money is basically zero.

I read an article today arguing that we all think we're smarter than we actually are. But at least when it comes to money, I think it's highly likely that I'm even dumber than I know myself to be.