Thursday, March 31, 2016

A New Candidate for Strangest Conversation in the World

Heads up: If you think my last few posts have been morbid, this may be one you want to skip. Just sayin'...

Imagine a conversation with your dental hygienist. You're sitting in the chair and she's asking you about your flossing habits. You're telling her that you floss every day, even though the last time you saw your dental floss it was buried in the kitchen junk drawer because last Thanksgiving you ran out of string and had to use dental floss to truss your turkey. And even though she knows you're lying, and you know that she knows you're lying, it's all very professional, friendly and collegial. 

Now imagine that instead of talking about your oral hygiene habits you're talking about the process for securing the drugs that will allow you to depart this mortal coil before you wind up semi-conscious, wearing diapers and on a morphine drip. 

That's the conversation I had with my palliative nurse this morning, and it was the strangest conversation I have ever had (and I've had a fair number of odd conversations in the last two years). 

The thing I love about my palliative nurse is that she has mastered the ability to (appear to?) be emotionally engaged while never, ever allowing that emotion to break. I've found that when it comes to cancer people wind up on a spectrum. At one end you've got folks like most of the oncologists I've dealt with. They're sort of like the guy on Dragnet. They basically bring zero affect to the table, so all you get are facts. At the other end of the spectrum are the emotional wrecks. The people who unable to get past the emotions of the situation and so they just emote. 

Now obviously, most people fall somewhere in between. But here's where my palliative nurse, as well as my PA and a few others I interact with, excel. Most people, when you get into the nitty gritty of cancer and dying, they break. You can see it in their faces. They either completely disengage with you as a person, or the emotion becomes too much. Tears well. Voice patterns change. You can see them working to keep themselves together.

My palliative nurse? Never. She never retreats, not even an inch, but she never reveals the slightest indication of being overwhelmed either. It's really amazing to watch. 

Anyway, back assisted suicide. 

So the SCCA does not have an institutional stance on departing early. It's up to the patient's individual doctor, though the social work department will help you find a supportive doctor if the one you've got isn't. Interestingly, she didn't have a lot of specific information about the actual drugs they prescribe as it seems like there's a fair amount of variance. They'll prescribe an anti-nausea pill to take first, so you don't heave up what follows, and something that keeps your heart from freaking out when you take the drugs, but then it's essentially just a gigantic overdose of some narcotic. What that narcotic is will depend on, at least in part, on what's actually available as these drugs can become hard to get. Interestingly, finding a compounding pharmacy that can dispense the drugs can also be problematic. You can't just drop in at Walgreens and pick it up. The medication has to be specifically constructed for you, and there are only a few pharmacies in the state that can do it. 

The drugs have to be dispensed in Washington state, though when I asked what she knew about the viability of going somewhere else to take them, she just sort of smiled and said somethings you just don't want to explicitly talk about. Fair enough, though I'll come back to this subject in a minute.

Eventually our conversation turned to some of the practicalities associated with this process, and some of the more statistics. When she started to talk about why -- at least in theory -- there seems to be a significant number of patients who secure the prescriptions but never fill them, things got really interesting. And by "interesting," I mean so monumentally insane that it makes my head explode.

Why do patients secure, but not fill, their prescription for drugs to expedite their passing?

Reason #1 -- They can't afford them

According to my nurse, the drugs prescribed to kill you -- let's just call a spade a spade; I'm running out of euphemisms -- can cost as much as $1,500. And "of course," she says, "insurance won't pay for it so it's all out of pocket." So yet again, we have a case where one's health care options are significantly dependent on one's financial resources. 

Best health care in the world, baby!

But here's the head exploding part. Assume for the moment that a) you have cancer and just six months to live, and b) you have reasonably good health insurance. At this point, you basically have three options: 1) you can opt for the death with dignity at a cost of $1,500; 2) you can opt to continue with chemo, at a cost of roughly $50,000 a month for six months or $300,000; or 3) you can opt for palliative care only for six months which, at Medicare's designated $151/day rate, would cost approximately $27,000. 

So for your last six months of life your insurance company can expect to pay $300,000 or $27,000 or $1,500, but they specifically exclude the $1,500 option as unallowable. What the hell? How can this possibly make sense? Aside from religious zealots, fake religious zealots, hypocritical politicians, the fearful, and the generally ignorant, who could possibly gain from such a stupid, stupid policy?

Nevermind. I answered my own question. 

Reason #2 -- They can't get the packaging open

Remember how I mentioned that the killer drugs are basically just a big overdose of narcotics. My nurse tells me that in at least one configuration used in the past, the prescription was for ninety capsules, each one individually wrapped. Ninety! So you spend your last hours on earth peeling the backing off ninety little capsule windows? Assuming, of course, you can do it. Speaking from experience, when I was on my first set of infusions late in 2014 buttoning a shirt was asking a lot. I'm not sure I physically could have pulled the backing off ninety capsules -- at least not without spending a few days on the task. Apparently, others have had that same problem.

And by the way, ninety pills? Who wants to swallow ninety pills?

And by the way again, if one wishes to depart this mortal coil in some beautiful and exotic place, how on earth are you supposed to get ninety pills -- and high-powered narcotics no less -- through airport security? 

Reason #3 -- They wait too long

This is the one that terrifies me. You've got your magic pills, you're all set to go, but today's a pretty good day so you decide to wait. And then tomorrow's pretty good, too, so you wait again. And you keep waiting, and keep waiting, though good is becoming less good, and then suddenly good is terrible, but you're no longer home with your magic pills. Instead you're in the hospital with a bunch of people trying to keep you alive. They can't, and they don't, but your time table is now their time table. 

Reason #4 -- They change their mind

The loss of control never comes, or isn't as bad as expected. The pain proves tolerable. The cost of care is less than was feared. In short, whatever it was that drove the patient to ask for the escape hatch stops being an issue. 

One last bit of humor. So, the death with dignity law includes a section that recommends that the patient have someone present when they decide to depart. I asked my nurse if she knew the logic behind it. She had two answers. First, so that there's someone there to deal with the body. Fair enough. Second, and this is what I found funny, "in case something goes wrong so they can call someone." In case something goes wrong? Like what? Like not having taken enough drug. Come again? How would this observer know you hadn't taken enough drug? Do they get a checklist or something? And who do they call? It's not like you can call 911 and say, "I've got a patient opting for death with dignity, but they didn't take enough drug. Could you come out and give them some more?" I mean, if something goes wrong it seems like you'd have way bigger problems than any observer could solve -- at least an unarmed observer. But having I think inadvertently dug this hole, the nurse dug her way out by explaining that she'd never heard of a case where the drugs didn't have the desired effect.

And so ended my very weird conversation. 

Tuesday, March 29, 2016

C Is for Cookie...and Cancer

The other day I saw this add for the iPhone 6. It reminded me of cancer -- of course, what doesn't these days? -- especially the part at the end where he checks the timer and learns that only 52 seconds have passed. 'Cause you know, I've had cancer for about twenty-two months now, but it feels more like twenty-two years. 

Me and the Cookie Monster? We got a lot in common...

Monday, March 28, 2016

They Really Should've Put Cancer on the List

This is a little old -- and fair warning: you may find yourself humming the tune for quite some time after listening to it -- but at this point in my life I find it an entertaining reminder for exploring your options...

Saturday, March 26, 2016

The Latest Adventure in Celebrity Cancer

This morning I had the television on in the background when some sports show came on. I was busy so I didn't turn it off. First there was a story about Half Moon Bay and the surfers of Mavericks, which didn't do much for me (though it generates some impressive pictures), but then the show turned to a story about an NBA broadcaster who was battling leukemia. 

I'm not much of a basketball fan so I didn't recognize any of the names, but I'm always curious about how cancer is presented so I did stop and watch. The reporter gave a rundown on his basic story, with lots of interviews. The guy was diagnosed with leukemia, treated with chemo combined with a bone marrow transplant from his son, and declared cancer free. That lasted a day. Then he received an experimental chemo treatment -- which, at fourteen days of 24/7 chemotherapy, sounded really horrific -- followed by a second bone marrow transplant. And now he's currently queued up for the third round.

All good. All normal. But then came a bit at the end when the host of the show asked a few follow-up questions of the reporter. This is when it got interesting.

The host asked the reporter specifically about the experimental treatment, wondering if anyone suffering from leukemia could receive the same treatment. Well, no, says the reporter. It seems our NBA broadcaster didn't "qualify for the program," but his wife, who "had experience with the medical supply industry," told the doctors that they didn't want the program they just wanted the drug. So he was given the experimental drug.

Now I could have this completely wrong, but it seems like we have an experimental treatment undergoing a clinical trial to secure FDA approval. If so, there's a protocol with inclusion an exclusion criteria defining who's allowed to participate. Our broadcaster didn't qualify, so he couldn't be part of the trial, but they gave him the drug anyway. FDA rules will allow for that in certain circumstances. 
But here's my question: How many people who didn't meet the enrollment criteria but weren't celebrities were similarly given the treatment off protocol? I have no real idea, but my guess is not many. 

It's good to have resources.

Wednesday, March 23, 2016

I Forgot a Minor Detail

I realized I forgot a minor detail in my summary of RCW 70.245. Here's 70.245.060: 

If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling. Medication to end a patient's life in a humane and dignified manner shall not be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.

So if I've got this right, if one of the doctors your required to find decides you're depressed enough that it impacts your thinking they can refuse to prescribe life ending drugs until such time as you're not depressed. Fair enough, I supposed, but question: if you've got a terminal disease that's going to kill you in less than six months how is it even possible to not be depressed? 

I find it hard to imagine that there are too many people running around saying, "Oh, yay, I'm dying. I feel so great about that fact, I think I'll try to accelerate that process."

Yes, that describes my mental outlook exactly. 

But tell me you don't see the conversations all too frequently running like this:

Doctor: You have six months to live.
Patient: I'd really rather not deal with the cornucopia of crap that's going to come in my final days. How 'bout we just end it early, while I'm still human and still me.
Doctor: You want to die before your time? You must be depressed. You should go in for six months of counseling, then we can revisit this issue.
Patient: But I've only got six months to live.
Doctor: Convenient that, no?

Although maybe I'm too pessimistic. Here's a graph from the state's Department of Health showing how many people have obtained prescriptions under the death with dignity law since 2009:

It's not the hugest number in the world, but it's not zero. But at least a few hundred people have made it through all the hoops.

Of course, what they don't tell you is how many people tried to make it through but got diverted. According to another table the DOH makes available, 12,190 Washington residents died of cancer in 2014, and 129 of the 176 people who opted for the early exit were dying from cancer. 129 divided by 12,190 is basically 1%. One percent of people dying of cancer opt not to stretch it out to its limit. 

Does 1% seem like a lot? Or a little? Personally, I would've expected more. But what do I know? I'm depressed...

Monday, March 21, 2016

Today's Depressing Post Is Brought to You by RCW 70.245

Otherwise known as the Washington Death with Dignity Act. 

I wouldn't call it an entertaining read, but it was certainly an educational one. You can definitely sense the balancing act the legislature was attempting to accomplish. If nothing else, the number of hoops you have to jump through are a good indication that this was not something anyone was excited about. 

If you're the type who likes to read through governmental codes, you can find the full text of the law here. But for those who prefer a summary:

You have to be a Washington state resident.

You have to have two doctors attest to the fact that you have a terminal disease with a life expectacy of less than six months.

You have to first make an oral declaration that you wish to concede your last days, then you have to wait two days, then you have to make a written declaration, then you have to wait fourteen days, then you can get a prescription for the necessary drugs.

Somewhat oddly, the model declaration requires the patient to identify whether they've told their family, aren't telling their family, or don't have family to tell. 

The drugs have to be self-administered. There's no allowance for anyone to help though, somewhat oddly, they do encourage the patient to take the drugs with someone else present. Less oddly, they also encourage that the drugs not be taken in a public place.

The written declaration must be signed by the patient, the patient's primary doctor, and two witnesses, and there are a bunch of rules about who can be a witness (e.g., not anyone who's in the patient's will). 

Of course there's a bunch of language about liability, mostly designed to protect the doctors and pharmacists who write and fill the prescription. Interestingly, there's specific language stating that if the patient takes the drug in a public space, their estate is responsible for any resulting liabilities.

Of course the legal side is just half the issue. With the requirement for the involvement of at least five people in the process, you also have to find five appropriate people -- two doctors, a pharmacist, and two witnesses -- willing to play their parts. Initial indications are that's a lot harder than you might think. I've only begun poking at various hospice and palliative care options, but nearly every webpage I've looked at or person I've talked to leads with the statement, "we don't do death with dignity." 

It should make for an interesting conversation with my oncologist, though probably not one I'll have anytime soon. I'll need to work my way up to that one, I think. 

Sunday, March 20, 2016

Phone Blogging from the Mercer Island Half (Now With Cleaner Photos)

Thanks to everyone who came out to join the minions for the Mercer Island Half (or 5K). Extra thanks to Leslie for acquiring the hats. We definitely stood out in the crowd...

Saturday, March 19, 2016

Hope Springs Eternal (Dammit)

If you do a Google image search for "hope" you're going to find a lot of images like the one I've pasted here. Lot's of reassurance that there's always hope, hope springs eternal, hope changes everything, hope creates the impossible.

Blah, blah, blah.

But in a way it's true. Not in the sunshine and rainbows way that the Google images project, but in a more problematic way. A way that forces you to make a bunch of unreasonable choices because you think things might change when, quite frankly, they won't. 

No one would accuse me of being a particularly hopeful person, but I find as I'm making choices about treatment and how to spend my time that I'm making a bunch of stupidly hopeful decisions. For example, there is not one doctor I've interacted with yet that believes my cancer is curable. They are all just trying to postpone the inevitable. And as I've noted, chemo -- even the-limited chemo I'm doing -- is absolutely horrible. So why do it? Why put up with the side effects if all it's doing is delaying the inevitable?

All I can figure is that it's delusional hope. You figure that despite the fact that everyone's telling you there's no chance for a "cure," maybe some miracle will happen. 

But miracles don't happen -- at least not the kind of miracle that make putting up with the horror of chemo worth it. 

And yet I still keep going in for the infusions.




Tuesday, March 15, 2016

Imagine That

Here's a thought experiment: try to imagine what your life will be like in five or ten years. The actual number doesn't matter. Just pick one and try to paint the picture. Where will you live? Who will you live with? What will you do? For work? For fun? Be as detailed as you can.

Got it? Ok, now here's the thing: I can pretty much guarantee you're wrong; fundamentally, substantially wrong. 

Think about that picture again, but this time focus on the person in the middle of it. You, right? But I'll be you anything it's the you as you are today. But who you are today is not who you're going to be in five or ten or whatever number of years. Life will happen, time will pass, and you will be different. You'll be smarter (or less smart), your memory will be better (or worse), you'll be faster (or slower), stronger (or weaker), happier (or sadder), etc., etc., etc. Maybe better, maybe worse, likely a bit of both -- but definitely different. 

Obvious right? But as obvious as it is, as we look to the future it's hard to acknowledge and nearly impossible to account for. How will you be different? Who the hell knows? It all depends on what life brings you. So we just ignore the question, project our current selves forward in time, make our plans accordingly and then deal with the gaps as best we can as they arise.

The problem with a terminal disease is that it makes this problem vastly worse. The rate of change increases astronomically at a time when your expectation is that it's going to be at its lowest. 

I realized this on my trip to New Zealand, as I began to recognize that the differences between what I was experiencing and what I had expected to experience at the time the plans were made was huge. To throw another metaphor into the pot, imagine planning to run a marathon, training and preparing and getting geared up. You're feeling great and ready to go. Then, when you get tot he starting line, someone straps a twenty pound weight to each of your ankles. Needless to say, you won't be running the race you expected. 

That's sort of what things are like for me these days. And it makes it really hard to know what the right thing to do is. How do you prepare for a race if you don't know how much weight will be strapped to your legs -- or if you're going to wind up strapped to a chair?

And we haven't even begun to account for the effects of hope. There's another big problem...

Sunday, March 13, 2016

That's It for New Zealand...and Cat Vacation

Kevin and I are both now home. Kevin seemed to enjoy cat vacation, and definitely didn't want to leave. It took a lot of work to get her into the box. But her sitters eventually got her cornered, so she made it back home. 

And after just twenty minutes of pouting hiding, she's back on her corner of the bed. 

The GCW Tour, Sydney & New Zealand: Auckland

The GCW Tour, Sydney & New Zealand: Middle Earth

So here's the story of how the Shire came to be, as told on the Hobbiton tour...

Peter Jackson's wife had visited the area around Matamata and recommended it as a possible location for filming the Shire scenes in the Lord of the Rings movies. The location scout visited thirteen farms before locating one with the lake, massive tree and seclusion needed for the shoot. They rented the farm, built the sets, and spent three months filming on the farm.

Always intended to be temporary, the sets were scheduled for destruction about the time the first of the Lord of the Rings movies was released. As the story goes, the tear down was started, but a storm delayed the work. During the three week delay, Fellowship of the Rings was released, and a few New Zealanders recognized the place where the scenes in the Shire had been shot and showed up at the farm to take a look. 

Recognizing a revenue source when he saw one, the farmer put a stop to the destruction of the set and instead started organizing tours.

Jump ahead to the Hobbit. When the production company returned to the farm to again secure permission to film, the farmer said sure, provided the new set was built not with untreated wood and polystyrene but steel and silicon. At this point, then, the set is a permanent part of the farmland.

And, in fact, the original farmer has retired to the city. The farm is now run by his two sons, one of which farms sheep (the wool from which becomes carpeting in China) and cows (which become Big Macs) and the other of which farms tourists. 

They didn't tell us which half of the farm is the more profitable. 

But if you're in the neighborhood and at all a fan of this sort of thing, it's a pretty fun tour -- especially if, like us, you manage to get put in a tiny group of just seven people. It probably would've been less fun with forty. 

I will say, though, that with tours leaving every fifteen minutes, you do have to work a bit to get pictures without a bunch of people wandering through them...

The GCW Tour, Sydney & New Zealand: Rotorua

So here's the story of Rotorua, roughly as it was described in the little cornball movie that played at the Rotorua Museum (and, if my actor recognizing abilities are any good, starrig the guy who played Boba Fett's father in the Star Wars prequels)...

The earliest natives arriving in Rotorua were basically running from the natives on Hawaii, having done something there to piss them off. When they landed in Rotorua, they found a volcanically active area with lots of other resources as well. So basically, a pretty nice spot.

Sometime in the early 1800s, the whites found the land as well. They, too, thought it was interesting and had useful resources. So deals began to be made between the Maori natives and the new whites, which resulted in a burgeoning tourist industry focused on the "pink and white terraces," and spas and mudbaths. 

Unfortunately, whether the result of angry gods and/or shifting tectonic plates, the local volcano eventually blew. This event managed to kill most everyone who was living in Rotorua at the time, and also eradicated some of the features that had brought the tourists in the first place.

But of course the few remaining people began rebuilding. This time they built bigger. And with the end of World War I and the subsequent flu epidemic there was a significant market for the healing spas. So again came the tourists.

Today, the spas -- or at least new versions -- are still there, but they aren't really the tourist draw they once were. Now it's jet boats, zip lines, downhill luge runs, skydiving, bungee jumping. and the like. But much of the place still smells like rotten eggs, there are fence off lakes filled with boiling water, and what was once the great spa is now the local museum. 

It's a nice museum, though there are only a few places you can take pictures. 

Boiling -- and stinking -- waters in the local park 
The Rotorua Musuem -- formerly the primary spa
The basement mud baths in the old spa

Friday, March 11, 2016

The GCW Tour, Sydney & New Zealand: And Now We Pause

I have a few more pictures to post, but there will likely be a delay while I drag my butt through three airplanes, four airports and probably on the order of six different terminals. If Qantas is cooperative, I may be able get on the internet during the major flight from Sydney to LAX.Otherwise, I won't be posting until I get home.  

I guess we'll see. 

The GCW Tour, Sydney & New Zealand: This Town Really Likes Corrugated Sheet Metal

It's not every day you find a town that enjoys corrugated sheet metal the way Tirau, New Zealand does. They had buildings shaped like animals -- a dog and two sheep at least -- made out of sheet metal, and one of their churches had a sheet metal Jesus. The retail section had a number of sheet metal signs of varying degrees of complexity.

It reminded me a bit of Route 66...

Wednesday, March 9, 2016

The GCW Tlour, Sydney & New Zealand: A Giant Carrot...Well, Just Because

The GCW Tour, Sydney & New Zealand: Dave at the Queen Elizabeth Park

The GCW Tour, Sydney & New Zealand: The Weta Cave

If your tastes run to movies with special effects, you've no doubt seen the output of the various Weta companies --the Weta Workshop, Weta Digital, and a variety of others -- over the past few decades. These are the companies that Peter Jackson and his colleagues formed and developed as they worked to expand their filmmaking capabilities.

Most of these operate out of a Wellington suburb, and with them runs the Weta Cave, which gives tourists the chance to buy very nice but fairly pricey Workshop replicas, see a short video about the companies and the work they do, and take a tour of the Workshop to see how they work.

It's an interesting tour, and what they can do with plastics and rubber these days is amazing.

Unfortunately, you can only take pictures in the cave (i.e., the gift shop) -- not on the tour -- but the trolls and orcs were pretty photogenic...

The GCW Tour, Sydney & New Zealand: We Interrupt This Travelog to Bring You an Update on Kevin

Actually not an update per se, but the folks who are watching her sent me some photos and they're much better at cat photography than I am. So here's a picture of Kevin enjoying cat vacation...

Tuesday, March 8, 2016

The GCW Tour, Sydney & New Zealand: Last Thought on the South Island

You can add "stellar low tides" to the geologic accomplishments of New Zealand's South Island...

The GCW Tour, Sydney & New Zealand: Kaiteriteri Beach (in Two Sizes and Two Orientations)

Size and orientation 1:

Size and orientation 2:

And, yes, I did have a lot of time to kill on the ferry. Why do you ask?

The GCW Tour, Sydney & New Zealand: 360 Degrees of New Zealand, Rotated 90 Degrees

Admittedly, perhaps not the most photogenic chunk of New Zealand, but the spot was important to somebody.

The GCW Tour, Sydney & New Zealand: The Old Ghost Road

I'm not sure why they called this 80 km hiking and mountain biking trail the "Old Ghost Road" when it wasn't actually fort, but it had a really great bridge to kick it off. Unfortunately, it also had the nasty little black bitey bugs we'd been warned about, so while I was taking the pictures of the bridge it suddenly felt like a saber toothed tiger was gnawing on my legs. 

Nope, just a bunch of teeny-tiny black bugs.

And so ended our adventure on the Old Ghost Road...

The GCW Tour, Sydney & New Zealand: The Pancake Rocks

For a variety of reasons, I'm not sure we've really seen the best New Zealand's south island has to offer. But that's not to say we haven't seen some snazzy bits, and the pancake rocks definitely qualify as snazzy bits. Aside from the very cool geological contribution of the rocks themselves, you also had some very nice pathways as well as the wekas.

Most happily, New Zealand's nasty little black fly thingies -- which look like a standard gnat but bite like a piranha -- which I'd previously been told plagued the pancake rock area were nowhere to be found.

We came across those guys later.

I could've done without funding them.

Anyway, here are some pictures of the rocks...