Sunday, January 31, 2016

Everything's Relative

Under normal circumstances I'd say that this was another lost weekend,* but under cancer circumstances I was actually pretty productive. I cleaned both the kitchen and the bathroom, did my laundry (which is getting increasingly easier as fewer and fewer of my clothes fit), finished the first part of a new art project, and began training for the Mercer Island 5K. 

Of course "training" in this context means a friend and I went for a 3.1 mile (i.e., 5K) walk and then stopped for brunch. At this pace I'll be ready to run my 5K on the second or third anniversary of the event. But there's still (misguided) hope. If I actually start on m Couch to 5K app, and skip most of the days of rest, I still have time to make it to the session where you run the entire 5K.

Or I can just opt to walk it. They say walking's good exercise. Everyone likes walking. Easier on the knees after all. Breathing's easier, too. 

Anyway, if only I could look past the need to plan for the upcoming New Zealand trip, nail down the details on the trip(s) that will follow it, put together the picture frames that have been sitting on my dining room table for months, order some curtains for my bedroom so I don't have to change with the lights off, and pay my month end bills, I'd feel like I had a productive weekend. 

It's hard to come to grips with the person you are and forget about the person you were. Course if you put it off too long you just wind up embarrassing yourself. 

* Not in the alcoholic sense, but in the sleeping and doing nothing sense.  

Thursday, January 28, 2016

I Seem to Have an Attractive Armpit

Well, this is new. And weird.

Awhile ago I was sitting on the couch watching TV, and was surprised to find Kevin's head in my armpit. The cat's lying beside me, and her head is in my armpit. And not just in my armpit, but actively poking me in the armpit. It's nice that she's being friendly, but, actually, I could do without her head poking me in the armpit. 

So now I sit here hunched over my laptop, and, once again, Kevin keeps sticking her head into my armpit. This cat is so weird. 

And since no one wants to see an armpit, mine or anyone else's, here's a picture of some damp purple flowers. 


I never saw it, but I seem to remember a few years back there was this movie about a woman  who gets terminal cancer and tries to find a replacement mother for her kids and spouse for her husband. Happily, I don't have that particular issue, but I can sort of understand the motivation. 

I've been thinking a lot recently about how one goes about unwinding a life. You spend 17,500 days (give or take a few hundred) building up all these structures that interconnect with and define your life, and then you've got to figure out how to (carefully) pull it all part -- or at least stick in some buttresses that will hold the important parts up when you're gone (e.g., finding a replacement mom for your kids) -- so that it all doesn't come crashing down when you're gone. Or worse, when you're otherwise occupied with being irredeemably sick.

By way of example, at this point my paycheck automatically goes into my bank account, and most of my bills automatically come out. Which means when I finally reach the point where there's no longer a paycheck going in, I've got to either a) stop the bills from coming out, b) make sure there's money from somewhere else to cover the expenses, or c) deal with the ramifications of a bunch of bills going unpaid. All that shit has to be unwound, which I'm finding a lot harder to do than it really ought to be. 

And let's not forget about our new electronic world. I'm not on Facebook, but I've got three email accounts, an account on LinkedIn (which I mostly ignore but is nevertheless out there), more retail accounts that I can keep track of, plus all the banking accounts (some of which aren't even mine anymore but still have my name on them), retirement accounts and all the rest. And like most normal computer users, my password management is a joke. At one point I had most of them written down, but since I didn't have the piece of paper the last time I accessed them I had to change them, and since I didn't have the piece of paper I didn't bother to write the new password down, so whomever gets the lucky task of trying to tie up all those loose ends is quickly going to get frustrated finding that basically none of my documented passwords work. 

How on earth do you pull all that apart so that you can keep living life while you're here, but not have a complete disaster when the chemo and/or cancer finally overwhelms the brains cells? (Partial answer: Kill the LinkedIn account; it's not like I'm going to be applying for any more jobs.)

And speaking of jobs, then there's the job. I've long been of the opinion that someone in a position like mine doesn't make themselves valuable by ensuring no one else can do what they do, but by making sure everything they do is well documented, replacements are trained, and there's infrastructure in place to keep things running. In short, you make yourself valuable by making yourself replaceable. It sounds good in theory, but I must actually suck at it because every time I come back from a leg of the GCW Tour I realize there's still more I haven't documented or trained someone else how to do. The place will certainly survive without me, but in a few areas it would be pretty painful if it happened right now. So I go, I come back, and I add more documentation projects to my list.

But wait. Don't order yet. There's still all the stuff that kinda sorta might take care of itself, at least if my will was well-written, but probably won't and so really ought to be taken care of now, but which, in the grand scheme of things, is hard to get worked up about enough to actually do anything about it. So, for example, years ago I co-authored a book. It was an academic book, which means it generates about twenty bucks a year in royalties, which are then split between me and my co-author. Now, it's not like anyone involved is going to be sweating their share of $20, and I doubt Jay is ever going to bother trying to update or otherwise do anything with the book such that he'll need clear access to the copyrights, but still it would probably be pretty useful for me to sign over my share of the copyrights before they become part of my "estate" and thus even more unmanageable than they already are. Yeah. Uh huh. I'll get right on that. 

Of course, I am ignoring the obvious alternative: just die and leave all this crap for someone else to sort out. 

Decisions, decisions...

Wednesday, January 27, 2016

Chalkboard Poetry

Maybe it's just Seattle, but it seems every bar and restaurant in town now has a chalkboard out front upon which is written some clever saying, usually on the subject of beer, wine or alcohol. Ben Franklin and Homer Simpson seem to be popular sources for such words of wisdom. 

But a friend sent me a picture taken in front of some such place that raised the stakes by providing poetry. I'm not sure the poem was original, but it still struck me as pretty great. Since the picture was kind of fuzzy, I shall instead just quote it here:

A Haiku about getting out of bed

No no no no no
No no no no no no no
No no no no no

I'm not usually much of a poetry fan, but that one really spoke to me. Can't imagine why.

Monday, January 25, 2016

Poor Chewbacca

Worth Watching

I was channel surfing the other evening and came across a movie called The Way. Martin Sheen and Emilio Estevez play father and son (which I'm sure was a stretch for them). The son dies while in Europe and when the father goes to claim the body he learns that the son had just begun walking one of the Camino de Santiago routes. So the father finishes the journey for his son, carrying (and dispersing) his ashes along the way.

As low key as it is, I thought it was kind of a great movie. A bunch of people, knowingly and unknowingly, helping each other get through their pain. Which makes it sounds depressing, but it wasn't at all. Just human, and actually kind of funny.

Although I have to confess that I'm always a sucker for movies that let me think, "Hey! I've been there," and this one had more than a few of those thanks to my trip to Spain and Morocco with the niece.

Anyway, worth checking out if you get the chance. 

The Next Big Math Problem

Let me preface this post by saying this is the very definition of a(n extremely privileged) first world problem. Not everybody has the options I have, and I am extremely grateful to have them. But knowing I've got choices others don't have doesn't make choosing between them any easier. 

If my calculations are correct, my short-term disability (STD) insurance is going to run out relatively soon. It's a generous program, so I can hardly complain, but two-years of routine cancer treatments is just more than it was intended cover. As a result, somewhere in the next few months I will have to transition to the next phase of maintaining a life while managing cancer. 

At first blush, it's a relatively simple multiple choice question: 

You have three goals: first, to make sure you have health insurance until the moment you die; second, to make sure your life runs out before your money does; and third, to make immediate choices that will maximize your longer-term interests, rather than selling out the long-term for the short. Given these goals, when the STD runs out, do you:

  1. Transition to long-term disability (LTD), assuming you can qualify?
  2. Stay in the job but reduce your FTE by the percentage necessary to offset the time needed for cancer treatments (and future legs of the GCW tour)?
  3. Cash in the life insurance and stop working?
  4. Some combination of key features of the above?

Of course in order to evaluate each of the options, you need to know the rules. So here they are (subject to change on an annual basis, but stable for now):

  1. "Annual income" for the purposes of your evaluation equals salary times FTE. Actual salary doesn't really matter for the purposes of comparing the options since, as between the options, it's just a constant.
  2. "Cashing in" your life insurance requires an attestation from your doctors that you're expected to die within two years, and will pay out, one time, at a desired percentage (not to exceed 80%) of annual income (see #1). 
  3. LTD, if you qualify, pays two-thirds of annual income (see #1).
  4. LTD does not cover health insurance, though you can purchase that insurance through your employer for a period of thirty-six months by paying both the employer and employee contributions. You can also purchase it on the open market (see #6).
  5. If you continue working, provided your don't reduce your FTE below 0.6, you continue to receive your employee health benefits.
  6. Washington State provides health insurance in accordance with the provisions of the Affordable Care Act. A quick search of the Washington health care website told me there are 110 (yikes!) plans I could potentially qualify for.
  7. If at any point you lose the job you lose both the life insurance and access to LTD.
  8. Life expectancy at this point is a shot in the dark, though the survival rates I was given would say, statistically, a year from now is the the likeliest outcome.* 

Pencils ready? Ok, what do you do?

Talk about your math problem from hell. 

* To quote Han Solo, "Never tell me the odds..."

Eleven-Dimensional Chess

One of my favorite bits in one of my favorite books involves a math genius who's drafted into the Navy at the start of World War II. As part of his induction he's given an aptitude test that involves some superficial algebra questions along the lines of “if the river is a mile wide and is flowing at a rate of 10 miles an hour, and a boat crosses the river at a rate of 4 miles an hour, how much further downriver will the boat be from its starting point when it gets to the other side?” Our hero, however, figures the Navy would never ask such a mathematically superficial question, so he starts doing calculus to determine the impact of the friction of the river bed on the flow of the river at each point across its width so as to accurately determine the river’s impact on the boat. 

It’s been awhile since I’ve read the book, but if I recall correctly, his experience with the test gets our guy a publication in a mathematics journal -- and an assignment to the marching band because the Navy thinks he's a moron. 

I'm not sure it was exactly the point the author was trying to make, but that chunk of it always made me think about the questions that underlie the questions. What assumptions do you have to hold if you're going to get to the "right" answer? Is this simple question actually simple, or is it complicated? Is this complicated question really complicated, or is it simple? 

In other words, do you (really) need to play eleven-dimensional chess to answer the question?  

Sadly, cancer seems to promote the need for eleven-dimensional chess. 

Sunday, January 24, 2016

Another Routine Weekend with Cancer

The telltale features of a routine weekend with cancer:

1. You spend more time sleeping than you do awake. I wasn't keeping detailed records, but my sense is that the split this time was about 60/40.

2. You count the number of trips to the bathroom in scores, not single digits. 

3. You don't accomplish much of anything, despite all your good intentions otherwise.

In other words, not much of a weekend as far as weekends go. 

This weekend, however, did have one noticeable positive feature. For the second time this winter, my furnace died. This, two weeks after the furnace guy came out and replaced the burners and the igniter. Happily, Sib2 came over and was able to determine that the problem was a loose wire, likely caused when the furnace guy wired in the new igniter and didn't strip the wire very far. So instead of spending the weekend in the cold, and spending a couple of hundred bucks to fix it, I got it fixed for free and spent the weekend being warm. Let's hear it for talented siblings. 

Friday, January 22, 2016

Speaking of Life Spans

Oddly, this week seems to have been a big one for research studies on end-of-life care.

First up, a study done at the University of Pennsylvania that compared end-of-life care in Belgium, Canada, England, Germany, the Netherlands, Norway and the U.S. Long story short, we're about average in terms of what we spend caring for people in the last six months of life, and similarly average in the percent of people who die in the hospital.

That said, it seems we try to do more for to for/to dying patients in the U.S. than in the other countries studied. For example, and of particular interest to me, over 40 percent of patients who die with cancer in the U.S. are admitted to the intensive care unit (ICU) in the last six months of life, more than twice the amount of any other country studied. We also do more pointless chemo: 39 percent of American patients dying with cancer received at least one chemotherapy treatment in the last six months of life, again more than any other country in the study. 

Since we're on the subject and just for the record, if I die in the hospital you can be completely and entirely assured that things did not go in accordance with my wishes. I want to die in my condominium, smiling as I think about the poor people who are going to have to figure out how to drag my 6'5" body down my very narrow stairs with the pictures on one side, the periodic table paintings on the other, and the 90 degree turn two-thirds of the way down. Best case scenario: they'll get me wedged into the corner, like that couch in the Google ad. It's probably just me, but I think that would be an absolute riot. 

Anyway, back to our research studies...

In addition to the end-of-life comparison study above, the Journal of the American Medical Association today published two more of my very favorite type of medical study: the comparison of medical choices normal people make to those doctors make. 

You will likely not be surprised to hear that doctors were once again found to be less likely than the general populace to be admitted to the ICU, less likely to die in a medical facility, and less likely to receive surgery in the period before their death. Doctors have experienced the reality of medical care while the rest of us see medicine on ER, House or Grey's Anatomy. Is it any wonder they make different choices than we do?

As one medical professional told ABC in response to the studies, "In many cases, we're not saving lives -- we're prolonging dying."

Oh yeah, sign me up for that. Make something intrinsically lousy be even lousier and last even longer.

I think not. 

Thursday, January 21, 2016

Who's Got a Longer Lifespan? Chewbacca or Yoda?

I'm not sure what it says in the official canon, but if current trends continue this Chewbacca isn't going to survive the night. I keep seeing him fly across the living room as Kevin grabs and flings him. This when she's not trying to pull his head off. Yoda, on the other hand, despite the seeming focus in the picture, gets the occasional smack, but doesn't seem to be attracting much attention  beyond that. 

Of course, it could just be that Chewbacca looks more like an actual mouse. Fuzzy brown does tend to turn up more in nature than does green under a white bathrobe. 

Wednesday, January 20, 2016

Exactly the Opposite of an Out of Body Experience

I've never actually had an out of body experience (though I did see at least part of Shirley MacLaine's crazy mini-series), but I think it's fair to say that the cancer treatment has created the exact opposite. At this point, I'm about as in-body as I could possibly be. 

Under normal circumstances, your body just works and you can basically ignore it. But once it's running with toxic chemicals, that becomes pretty much impossible. I walk down the hall and can't help but be acutely aware of where I am in space. Every step, every sway, and every inch between me and the wall resonates. Steps are even worse. Each step up, or down, demands conscious focus on how you're moving through space. Lose focus, and there's a fair chance you wind up on your ass. 

Speaking of which, on the first day in Costa Rica I slipped on some gravel and twisted my ankle. A month later and it still hurts. In short, I no longer heal. Every ache, pain, bruise or cut just goes on and on. 

And even normal stuff now demands body awareness. Routine experiences -- say, hunger or sleepiness -- become the starting point for lengthy ordeals involving startling responses and (metaphorical) pendulums that don't seem to ever stop swinging. 

But the worst of it is all the stuff that shouldn't involve your body, but now does. Specifically, thinking. It used to be possible to just think, but not so much anymore. Thinking now is like walking through water up to your waist. Who knew you could actually sense the inside of your skull? But I start to think, and my brain sort of begins to clog, my head starts feeling denser, my eyes get all scratchy, and pretty soon it feels like my brain is swelling up into my skull. 

Frankly, I could do with an out of body experience about now. Maybe I should go back and read some of Shirley MacLaine's books. 

Did You Know Today Was "Penguin Awareness Day"?

I didn't -- at least not until lunchtime, when all eyes turn to Facebook and I started to receive texts and emails from friends passing on the news. One also sent me this handy guide to recognizing penguins, so in addition to the four I posted from Antarctica, now you can recognize the other eighteen. 

Monday, January 18, 2016

Time Flies (Full Stop)

If you're part of my generation, you've likely been observing a significant expansion of membership in the dead parent's club. Our parents were generally fairly young when then had us, but now as we enter our our forties and fifties our parents are reaching their expiration dates,

It's weird how the death of a parent hits you, though, especially when it's a parent who's somewhat remote. You don't see them everyday, and then they're gone and you still don't see them everyday and you can begin to forget they're gone, since it doesn't really feel like anything's changed. But then something happens to remind you of your missing parent, and you're sort of flummoxed by the fact that two decades have passed since your mom or dad was there to answer the phone.

Today was one of those days for me. You see, my Dad, at least as I recall him, liked two forms of music: he liked show tunes, and he liked the Eagles. The show tunes he had on vinyl, so he mostly listened to those at home. The Eagles, on the other hand, he had on cassettes that he would listen to in the car. I can't even begin to count how many times I heard The Long Run during the divorce years, when Dad would pick Sib4 and I up at our house in the 'burbs on Friday, drive us to his apartment in Los Angeles, and then return us on Sunday afternoon. 

So today when I read that Glenn Frey had died, my first thought was of Dad. And I was immediately floored by the realization that it's been almost twenty years since he passed away. That's just weird.

But then I started reading about Frey and the Eagles. For those who weren't fans, the band was formed in 1971 following a tour backing up Linda Ronstadt. After selling a bazillion albums, they broke up in 1980, reforming again in 1994 to record Hell Freezes Over, and then touring sporadically until the conclusion of the recent History of the Eagles Tour last year. But here's the strange thing. If you do the math, that's (just) nine years of initial success, fourteen years of separation, and then twenty-two years (!) of reformation. But if you'd asked me, I would've probably put those numbers at twenty, fifteen, and ten. I mean, it seems like just yesterday -- not twenty-two years ago -- that the music industry was getting all excited about the Eagles getting back together.

So then I started poking around on the Internet testing my sense of history. Based on that experience, I think it's fair to say that I actually have no sense of history. Thirty years since The Breakfast Club? How can I possibly be that old?

More important, how can so many markers in time -- e.g., the death of a parent, an unparalleled event, even the release of a favorite movie or album -- feel both so recent and so, so long ago at the very same time?

Then, of course, there's the morbidly narcissistic question: what will be the event -- whose death? what anniversary? -- that inadvertently brings me to mind long after I'm gone? 

Happily, that one's not really my problem to solve. So instead I'll return to where I started, and in acknowledgement of the vagaries of time, and in honor of both Glenn Frey and my Dad, post the following:

Sunday, January 17, 2016

Terminal Hiccups?

The internet doesn't seem to have a firm answer to the question of whether or not one can die form hiccups, but I can the tell you without a doubt that it's possible to feel like you're dying from the hiccups. I'm now entering my fourth day with the hiccups, the occasional ten to twenty minute break notwithstanding, Four days is way too long for the hiccups. At this point, my throat hurts, my stomach hurts, and my chest hurts -- all from the hiccups.

According to one web site I did find, "any condition that can affect the regulation of breathing, or conditions that impact the upper digestive system, can provoke or be provoked by hiccups. This is because intractable hiccups are usually caused by an irritation of the nerves of the chest. Chronic GERD (common heartburn), laryngitis, thyroid enlargement, tumors, chest and ear infections, and hiatal hernia can trigger persistent hiccups."

I suppose colon cancer and chemotherapy fit right in there. 

Strangely, though, I don't recall hiccups being on the list of side effects that came with all my medications. They should have. Four days of hiccups are kind of sucky. 

Friday, January 15, 2016

Now We Know How Many

It's not a question I wanted to know the answer to, but now I know how many irinotecan infusions it takes to make all your facial hair fall out: four. Kind of a bummer, that. I definitely didn't need to see my chin. It's been some twenty-five years since I last saw my face without hair, and I could've happily gone twenty-five more.* 

Instead, I get to look in the mirror and see Elmer Fudd staring back. 

But it's good to know that the chemotherapies they use in treating colon cancer don't make your hair fall out. 

* Or however many I've actually got left.

Well, That Was Depressing

Apologies for that last post. To make up for it, here's something that had me grinning pretty much from start to finish. I love it when people with very serious personas unexpectedly reveal their inner goofball. 

Of course, it could also just be that I'm operating on two hours of sleep...

The Hardest Part

The hardest part of chemotherapy isn't the stuff that happens at the infusion center. It's not getting stabbed with a giant needle when they access your port. It's not the twisting and turning and syringes and experimenting as they try to get a blood return. It's not the conversation with the oncologist or the physicians assistant as they try to explain away the bad news and highlight the good. It's not even the infusion, with its cornucopia of toxic chemicals.

Nope, the hardest part of chemotherapy is trying to get to sleep the night after the infusion. 

You climb into bed alone and all the distractions that keep you going through the day -- work, house repairs, insane cat behaviors, art projects, dirty dishes, etc.  -- they all fall away. It's just you and your cancer. So your brain starts processing: questioning the decisions you've made, stewing on the decisions that will eventually need to be made, lamenting the "unfairness" of it all (as if fairness has anything to do with it; if you didn't learn that life isn't fair in kindergarten, you weren't paying attention), and generally wallowing in the negative aspects of life with cancer, and life generally.

But that's just the mental part. There's also the physical.

As your feet slide along the sheets you're immediately reminded of the neuropathy. Your toes start buzzing, and the skin around them starts to feel three sizes too small. The feeling fades, but every time you move your toes it all comes rushing back. 

And then you realize that everything -- literally everything -- hurts. Your head is pounding, because the Excedrin PM you took before you got into bed either hasn't started working yet or isn't going to work, and there's a weird buzzing in your ears. And though you pretty much spent the entire day sitting or lying down, your legs feel like you've hiked from the foot to the peak of a nearby mountain; You try to stretch and turn in the hopes that the pain will fade, but in doing so your toe inadvertently invades the cat's space, so now the cat thinks it's time to play and for the next thirty minutes you listen to her run laps through the condo, scratch at what you assume to be the carpets, and wrestle with the paper bag that you left on the kitchen floor. Occasionally she'll jump on the bed to make sure you're still there, but it's not long before the laps begin again. 

And in the midst of all this you notice the heartburn, pain that runs down your esophagus from the back of your neck to your stomach. So you wonder if it's worth getting out of bed to try to find a drug to treat it, not really knowing what, exactly, you ought to take. Prescription anti-nausea medication? Pepto-Bismo? Gas-X? Tums? All of the above? Moreover, you know that if you get out of bed you likely won't get back into bed. And this starts you balancing the scales in your mind: the desperate desire for sleep on the one side; the neuropathy, leg pain, back pain, headache, heartburn and buzzing on the other. 

Eventually your realize that it's just not worth it so you give up, opt for the Pepto-Bismo, and move to the couch where you can turn on the TV in the hopes of creating a distraction which might possibly allow you some sleep. 

We won't even begin to talk about late night television. 

But the worst of the worst? At some point your brain works its way back to the point where life was at its best, when you felt good and had the energy to be great at your job, a spouse that seemed to love you, and a big giant house on Ravenna, and you wonder how on earth you wound up here.

That's the hardest part. 

Thursday, January 14, 2016

More of the Same

Greetings from the SCCA infusion center, where I'm currently waiting for my very expensive drugs to be delivered, watching the screen savers cycle around on the nurses' computer, and generally being appalled by the fact the marketing department seems to have a more influence over the computer than IT.*

So what new things did we*** learn today? Not much.***** 

Best news: my tumor markers are down. Seven point something, which, if still outside the normal range, is way better than the upward trend into the high teens of my last few tests. 

Worst news, long-term health edition: my biggest tumor is even bigger. Not significantly bigger, but bigger. All the others are slightly smaller, but this one decided to expand. That said, all of them are officially categorized as "stable" since the changes don't amount to much.

Worst news, personal identity and aesthetics edition: no ink for me anytime soon. According to the oncologist, the Avastin lingers in your system for around six weeks preventing blood vessels from forming and preventing healing. So I'd need to be off the Avastin for at least six weeks before getting inked, and then would have to stay off it for as long as it took the tattoo to heal. And actually, I'd have to stay off it long enough for the tattoo to heal twice since the design I have in mind would take two sessions, with session one needing to heal before session two could take place. All of which is to say, the tattoo comes with a requirement for nearly three months off Avastin, the idea of which did not excite my oncologist at all.

And actually, I wouldn't be surprised if my medical record hasn't been modified to change my generic descriptor from "pleasant" to "possessing of misplaced priorities." This was the first time my travel schedule was identified as a problem, and the fact that I've not been on a standard schedule, where chemotherapy trumps everything else in life, came up a number of times in the conversation. As in, "Your trip to New Zealand isn't going force a delay of your infusions, is it?" And then later, "It's really hard to evaluate your body's response to the irinotecan without a set of stable time points to use as a comparison." 

To which I did not, but should've, responded, "Gee, I'm sorry if my need to actually live my life is getting in the way." One does not want to unnecessarily antagonize one's healthcare team. 

But I feel for him. I'm sure it is hard to figure out what's going on with me when you've got a five week gap in cycles here, and a four week gap there, rather than the standard three weeks, three weeks, three weeks you find with most everybody else. 

All of which lead to the conclusion that we just need to keep on keeping on, following the same treatment plan. In part, I think, because there's no good reason to do anything different, and in part because the oncologist is really hoping to get some results without too many variables affecting the outcomes. 

Fair enough.

And besides, my desired tattoo artist has a multi-month backlog, so she couldn't get to me until the summer anyway. Maybe by that time we'll have moved on to something that doesn't involve Avastin. 

* "Better care. Better outcomes. Better together." Oh, please. And what is with providers and their acronyms which generally communicate to me that way too many people spent way too much time rooting through a thesaurus so that the first letter of  the desired key words would spell out CARE or HEALTH or ART or SHIELD** or whatever?
** See the pilot episode of Agents of SHIELD, as previously discussed in this space.
*** Ah, the royal we. Always a useful indicator of either annoyance**** or false camaraderie. I'll leave it to the reader to decide which applies in this case. 
**** You know what else is an indicator of annoyance? Multi-tier, embedded footnotes. :-)
***** I didn't even learn my weight. The schedules were clearly getting out of whack in the clinic, so the LPN who took me back to my little room (thirty minutes after my appointment was scheduled) immediately ducked out to allow the oncologist to do his thing, promising to come back afterwards to get my vitals which would've been all well and good if I hadn't forgotten that she was coming back and so immediately left for the infusion center.

Tuesday, January 12, 2016

Do Something!

I was a philosophy major (among other things) in college, and I went to school at a time when pretty much everyone was convinced we were all going to die in a nuclear war -- nuclear war or cancer, set aside the issue of scale and it might actually be a debate -- so I wound up taking a lot of game theory and "strategizing your way through potential nuclear annihilation" classes.

Don't let anyone ever tell you a college education isn't useful. 

Anyway, I had this prof once who likened the subject at hand -- nuclear war? terrorism? doesn't really matter -- to a kid's soccer game. The prof apparently had small kids and so spent a fair amount of the weekends watching the kids play soccer, and, more important, watching the parents watching the kids. Apparently, at one point as he was watching, Team A got the ball and start running toward Team B's goal, with Team B largely trailing behind. What struck him was when the Team B parents began shouting at their kids to "Do something!" to prevent the inevitable goal from being scored. 

Far less clear was what the parents envisioned their kids actually doing. With Team B trailing behind Team A, and Team A sprinting for the goal, what, exactly, did the parents think their kids could do to stop Team A? The time for countermeasures had passed, and at this point all everyone could do was pretty much watch and wait to see what happened. Which, of course, for this prof became a metaphor for all the various situations we find ourselves in when someone's, literally or metaphorically, shouting "Do something!" at exactly the time when there's essentially nothing to be done.

I've gotta admit: that's how the cancer is feeling these days. I'll find out Thursday what the tumors are doing, but I expect a somewhat incoherent outcome. Not definitively bad, but not definitively good either. And at the same time, I'm not sure how much longer I can take the status quo. The treatment is laying waste to me. I'm constantly tired, everything hurts, and pretty much every countermeasure I'm given for those effects is, quite frankly, a joke. 

Hard to figure out what to do in those circumstances, even when a lot of folks seem to think I should do something. Or rather, Do Something!

Monday, January 11, 2016

Sad Proof That Everyone Dies

David Bowie
1947 - 2016

If I was going to bet on anybody avoiding the unavoidable, my money would've been on Bowie. I think it would've been apropos if he had actually turned out to be an alien. 

Not an alien. Just an artist. And now, sadly, gone. 

But what a body of work to leave behind. 

Sunday, January 10, 2016

A Few Bullet Points to Bring Us Up to Date

A friend in grad school who'd served a lengthy term in the Air Force once told a story about being on maneuvers the main feature of which was sleep deprivation. He said that at one point he started sobbing because it was his job to read the map and after however many days without sleep he couldn't do it. After this most recent round of chemo, I'm beginning to better understand how he got to that point.
I'd forgotten about the cumulative effects of chemotherapy. I hate the cumulative effects of chemotherapy.
I think the last time I slept as much as I did this past week was when I got a viral infection that put me down for a week and left me with Type 1 diabetes.
Sadly, I did not win the $800M PowerBall drawing on Saturday. Given the run of luck I've had over the past year or so, I figured I was due for something good to happen to balance out the scales. Apparently, not. Then again, $1.3B would have a much larger balancing effect, so maybe the planets will align -- i.e., a random event will occur to which I can assign after the fact meaning -- for me on Wednesday.
I'm now one week back from Costa Rica and exactly zero days into my Couch to 5K training. If I don't get started soon, I'm not going to be able to walk five kilometers much less jog or run them. 

Words I did not want to hear from my chosen designer: no reputable artist would tattoo someone undergoing chemotherapy. 

Not that I'm complaining, but how on earth did that guy miss that field goal?

And with that I think we're current again. 

Tuesday, January 5, 2016

Ancillary Reading

On the off hand chance you're reading this blog because you just can't get enough of people writing about living with (dying from?) cancer -- and, really, who can? -- allow me to recommend How Shall I Tell the Dog? by Miles Kington. 

Kington was a British humor writer and jazz musician who died in 2008 of pancreatic cancer. How Shall I Tell the Dog? is constructed as a series of letters to his editor proposing ideas for the content of his last book. Some of them are very odd, but some are very funny.* And for me at least, a lot of them really resonated. 

I do wish, though, that I could relate better to his story about needing to punch holes in his belt as he lost weight. I have just he opposite problem, and it's getting to be annoying.

Anyway, I read this on the plane back from Costa Rica and thought I'd pass it along. 

* Which is to say, the book is very British.

Dog Agility as Cancer Metaphor

If this dog represents the healthy human...

Then this dog represents the cancer patient...

Admittedly this was mostly just an excuse to post that second video which Sib4 sent me a few weeks back and which still cracks me up. At the same time, I was thinking about it today as I was walking to work and pretty much everybody on the street was passing me by. The experience made me wonder if the mastiff might not think he's actually fast. 

In many ways that's the real problem with cancer and cancer treatment: not just the fact that you're slow, but the fact that you can remember the days when you were fast and, sometimes, you can kid yourself into thinking that you still are. 

And then you walk down the street being passed by everyone, or go on vacation and spend way too much of the time sleeping. 

But I'll say this for the mastiff: he may not have been fast, but he finished the course. 

Monday, January 4, 2016

The GCW Tour, Costa Rica: That's All Folks

This should be the last post from the Costa Rican leg of the GCW Tour. As Sib4 put it, "we're like a bunch of senior citizens," and are either sleeping, reading, or packing for tomorrow's trip home. 

I am not looking forward to tomorrow. We'll be pretty much spending the entire day, and then some, in airports or on airplanes. 

But before we close out, I should mention last night's hotel, the Paraiso Quetzal Lodge, which aside from having lousy WiFi and overcooked food, was actually pretty fun. It's basically designed for birders -- who knew? -- which means you get lots of Japanese tourists with really big cameras, but also more hummingbirds than I've ever seen in one place, plus a bunch of other interesting and photogenic creatures.

The accommodations are fun, too. We stayed in a tiny little lodge glued to the mountain top that had space for two bunk beds and a double. I got the top bunk. The lack of insulation, heat, and hot water just made it an adventure. 

Here's some of what we saw...

Lodge #8

Sunrise from the window of Lodge #8

A random (and fat) bird

A non-random (and poisonous) snake
(someone found it and relocated it to this tree stump)

One of many mobs of hummingbirds
Anyway. tomorrow it's travel, Tuesday it's back to work, and Friday it's back to the focus on cancer with yet another scan. 

I'm missing Costa Rica already. 

Saturday, January 2, 2016

The GCW Tour, Costa Rica: So That's What We Look Like

A roadside cafe still had their New Year's decorations up, so we took advantage. Two days late, but this is is us: me, Sib1, Sib4 and Sib2...

The GCW Tour, Costa Rica: Dave at the Beach(es)

Costa Rica's Caribbean side...

Playa Cocles

Playa Cocles

Playa Negra

Playa Negra

The GCW Tour, Costa Rica: I'm Not Sure This Is an Approved Bicycle Helmet

It's not everyday you see someone riding their bicycle down the street with a monkey on their head.

Friday, January 1, 2016

The GCW Tour, Costa Rica: Embracing My New Spirit Animal

Our primary activity today was a visit to the Sloth Sanctuary. About ten miles up the road from where we're staying, the Sloth Sanctuary is a place where folks collect injured and orphaned sloths and try to return them to health. It was pretty fun, and pretty educational -- but also really challenging for me.

First, some details on sloths and the sanctuary.

Sloths are very solitary animals and live for about forty years. Baby sloths are cared for by their mothers for one year, at which point the two go their separate way. Thus, the sanctuary can only return sloths to the wild if they can be returned to full health and if they're older than one year when they're brought in. They have more than a hundred sloths that can't be returned, mostly because they were orphaned before the first year passed and so they don't know how to survive in the wild. 

The biggest threat to sloths are power lines, which will frequently kill mothers but let the baby survive.

The sanctuary tour starts with about forty-five minutes of education from the guide combined with exposure to half a dozen of the adult sloths who can't be returned. After that, you go to another room where you get to see the baby sloths, and then you climb in a boat and go out and look for wild sloths, and whatever else might appear.

At least you do if you aren't being treated for cancer. In my case, I could barely make it through the first session with the adults. Between the fact that you have to stand the whole time, which I can no longer do, and a few bouts of gastrointestinal distress, I had to bail out of the tour when the group moved to the nursery.

Happily, underneath the gift shop was a space designed for folks to sit and relax in which I found a hammock. So while everyone else went boating, I took a nap.

After hearing about sloths and watching them move -- it's almost painful how slow they are -- I've decided in all but one way cancer has turned me into a sloth. The one way? It turns out that to conserve energy, sloths only go to the restroom -- i.e., climb to the bottom of their tree, dig a hole, poop and pee into it, cover it up, and climb back up -- once a week. At this point, I can barely last an hour without a restroom break. 

Bathroom habits notwithstanding, I'm  adopting the sloth as my new spirit animal. You might notice the resemblance in these photos.