O Mi Gawd

Yesterday afternoon, a friend and I went for a drive. Afterwards, we went for Thai food. This is what I ate: eight snap peas, three small mushrooms, a bit of a tuna fresh roll, and two glasses of iced tea. And within ten minutes, I was in agony.

So we came back and I tried spending time in the bathroom, then lying on the couch, anything to get back to normal. Nothing worked. So my friend took and Uber home and I took an Oxycontin and a sleeping pill and went to bed.

And then I woke up this morning. 

Even post surgery, I think the pain was less than what I felt this morning. So I tried Oxycontin, and methodical breathing, lying on the bed, lying on the couch -- anything I could do to mitigate the pain. None of it worked.

Eventually I texted some friends to see if they could grab my prescription for magnesium citrate from the pharmacy. It's only three blocks away, but there was no way I could make it. Happily, one was able to step away from what she was doing and drop it off. Normally, it takes about four to six hours to take effect, you spend a couple of really painful hours in the bathroom, and then you're back to normal.

Hasn't quite worked out that way this time, but at least the pain has dialed down to something a bit more tolerable.

And in the course of all this I made an appointment for tomorrow with the palliative nurse to try to develop some better pain mitigation strategies. 

'Cause I'll be honest: a couple of days like today in a row, and I won't need to wait for killer drugs. I'll just muster enough energy to go outside and step in front of a bus. 

This kind of pain isn't survivable.

Medical "Systems" Were Not Designed for the Benefit of Patients

Last Thursday I was running low on one of my insulins so I went to the pharmacy to get a refill. There I was told that there were no more refills on the prescription, but the pharmacy would contact my doctor to get it refilled. So of course on Friday I got a voice mail from the UW Diabetes Care Center (DCC), where I was forced to go for my diabetes care, letting me know that a) I needed to come in for an appointment, but b) they would refill my prescription so I’d have the insulin I needed in the meantime. 

I tried calling back to schedule the appointment, but stupidly called during the lunch hour and so couldn’t reach anyone. Then I got busy at work and forgot about it.

Recalling the assurance that the prescription had been renewed, on Sunday I went in to the pharmacy to pick up my presumably refilled prescription.

Yeah, no. The pharmacist there told me that, actually, the DCC had refused the prescription. Joy.

So on Monday I called the appointment line for the DCC and, naturally, got voice mail. I left my number so they could call me back, and about twenty minutes later they did. Here’s roughly how the conversation went:

Scheduler: Hi, I’m returning your call. How can I help?
Me: I've run out of insulin, and my prescription has run out. I got a voice message that I needed to schedule an appointment before I could get a renewal, so I'm calling to make that happen.
Scheduler: Yes. That’s how it works. You have to be under the care of a doctor to get any prescriptions. Who’s your doctor?
Me: I have no idea.
Scheduler: I don't understand. What do you mean you have no idea?
Me: Let my explain. I’ve had Type 1 diabetes for thirty years. I also have stage IV colon cancer that’s killing me. Thus, I don’t really care about my diabetes anymore. I changed my insurance two years so I could be seen at the SCCA for my cancer. As a result of that change, all my other doctors changed as well. I don’t know who they are.
Scheduler: So you’re seen at the SCCA?
Me: Yes.
Scheduler: Oh, then you’ve called the wrong place. You need to talk to the SCCA. Let me transfer you.
Me: Wait! The SCCA does not care about my diabetes. They only care about my cancer. They referred me to a primary care physician at UW Medicine to get me diabetes care and insulin prescriptions. I saw that person once, and that person decided they didn’t have enough expertise in diabetes, so they told me I had to go to the Diabetes Care Center. I’ve been there once. This is why I’m calling you. I need to see a doctor at the DCC who can give me a prescription for insulin.
Scheduler: So who did you see?
Me: I have no idea. It was some med student or fellow or something. I saw them exactly once. I have no idea who it was.
Scheduler: Well, I’m not sure how you can expect me to help you if you don’t know who you need to see.
Me: A doctor at the Diabetes Care Center. Pick one. I don’t care. I don’t care about my diabetes. I’m dying of cancer. I just need my insulin so I can stay out of a diabetic coma while my cancer does its thing.
Scheduler: Let me put you on hold.
Me: Sure.
[musak, musak, musak]
Scheduler: Ok, you saw Dr. Somebody.
Me: Ok.
Scheduler: I can get you scheduled to see them again, but the clinic will need to renew your prescription since you’ll have to wait a bit for the appointment.
Me: Ok.
Scheduler: The next available time I’ve got is 8:45 on September 13. After that, the next available is November.
Me, internal dialogue with myself: Tell her you'll be dead by November. Tell her you'll be dead by November.

Me: September 13 is fine.

So now that I’ve had time to reflect, I’ve got a few questions:

1. What’s the point of a “medical system” if the people in the system can’t actually see what’s going on? Shouldn’t the scheduler be able to look in their little computer screen and see all my myriad doctors and pick the one that seems most relevant? Why was she so adamant that I provide the name (which she eventually located on her own)?

2. What’s the point of a “medical system” if the people in the system aren’t actually going to think systemically? I mean, I can pretty much tell you exactly how my September 13 appointment at the Diabetes Care Center is going to go:

They’re going to do a bunch of lab tests.

Then they’re going to sit down with me and start up some long-term strategizing conversations. 

They're going to not-so-subtly suggest that I go on an insulin pump. They're going to chastise me for not regularly taking my pill to prevent kidney failure, or my aspirin, or the other drugs they've prescribed to prevent long-term problems. They'll probably want me to talk to a nutritionist so I can bone up on my carbohydrate counting. 

Here's what isn’t going to happen – at least not until I push the issue (mwaaahaha):

No one’s going to look at my medical record in the “system,” see that I’m dying of cancer, and so come in and make the following speech:

Diabetes is a chronic, long-term condition. You’re currently facing a much larger short-term problem. There’s no reason for us to waste your time trying to modify your behaviors to mitigate the possible effects of long-term, diabetes-related problems that you’re not likely going to be around to see. So aside from making sure you have access to the medications you need, is there anything we can do, right now, to make things easier for you? If not, we apologize for wasting your time.

That is what "systemic care" would look like. And frankly, until I get that kind of response, my opinion is that any talk of UW Medicine providing "systemic care" is complete and utter horseshit.

The medical systems aren’t designed to maximize the quality of your care. They’re designed to maximize the quantity of the system’s revenues.

The Biplane Was Kinda Fun

Today was biplane day, and the weather was just cooperative enough that I got to go up for a ride. It was fun. The plane never gets much above 80 mph, nor higher than 1,500 feet, but it's a good ride. 

The pilot starts down the runway and after a hundred or so yards hits 60 mph and the next thing you know you're in the air. Given we were flying from Boeing Field, there's not a whole lot of maneuvering they can do since you're sitting right in the major north-south avenue for plane traffic in Seattle. But he flew north past downtown and basically right up Highway 99 to about Lynnwood, then threw a U-turn out over the sound and headed back down to the field. It was very scenic. 

The only real maneuvers come at the end as the pilot flies south past the airfield, then quickly throws another U-turn, drops altitude like crazy, and the next thing you're on the ground. 

So now I can say I've done that. More important, I learned a crucial feature of the bucket list: It's not just a list of things you want to do before you die, but also a list of things you can do to distract yourself from the fact that you're dying. 

The biplane certainly fit that bill. It wasn't the most exciting ride in the world, but it was all new to me -- and so distracting enough that I could spend a half hour thinking about lots of things other than dying. 

So. all in all, a pretty good way to spend half-an hour. Plus I got a certificate... :-)

Cancer Stinks

Actually, though, that may just be me. 

This occurred to me as I was sitting in my chair yesterday in my pajama pants when I received a text from my brother-in-law suggesting a movie. I had an hour to get ready, and at the end of that hour I had to be both ready to go out in public and also have enough energy to drive ten miles up the road and then to make it through dinner and a movie. 

As has become my habit, the first thing I start doing is striking all the inessentials from my to-do list. 

Moving through life with cancer -- at least cancer once it reaches this stage -- is a lot like that scene from the movie Apollo 13 where, as the spaceship is returning toward earth, NASA has to try to figure out how to restart the capsule. The astronauts have been holed up in the lunar lander, the space capsule has been shut down and basically frozen solid, and now they've got to get it up and running and ready for re-entry, but without ever exceeding twelve amps, or six volts, or twenty-three joules or whatever the measure is that will blow the fuses and basically kill the mission. 

So there's a scene where the engineers in Houston keep attempting, and re-attempting, to turn on a mock-up of the capsule without exceeding the stated limit.

That's pretty much how my days go now. You have your desired goal (say, get ready to go to the movies), you have your desired to do list (say, put the dishes in the dishwasher, take a shower, get dressed, etc.), you have a sense of how much energy each of those things will take, and you have the ability to rest, as the sole method of generating more energy. And so you start making the calculations and doing the trades. 

First, the non-essentials like "Put the dishes in the dishwasher" immediately come off the list. Those can wait until later when you've got energy to spare.

Then you make the easy trades, swapping Crocs or slippers for shoes that tie and socks. (You would not believe how much energy it takes to  put on a pair of real shoes and socks.) You trade a button down shirt for a T-shirt, because the energy it takes to button all those buttons can be better used somewhere else. 

And then you look at the things that once upon a time you would've thought to be essential, like, say, take a shower before you go out, and you second guess. You figure you'll be in a mostly empty dark theater where no one knows you, and you took a shower yesterday so you can't really be that dirty, especially since you haven't really done much beyond lay around in your pajamas, and since ten minutes not spent showering is ten minutes that can be spent resting and accumulating more energy, the trade off seems worth it. So you skip the shower.

But then you get on the road and realize that you perhaps weren't quite as clean as you thought you were. Which doesn't invalidate the trade off -- if taking a shower, regardless of how necessary, would've consumed more than the available energy, leaving you unable to actually jump in the car and drive, the shower's got to go -- but it does perhaps readjust your estimate of the appropriate social distance to maintain between yourself and anybody around you.

And the next day you start with a new list of items and a new set of energy values, and you do it all again. 

Which, in all honesty, means there are days where you sort of stink. At least that's proven to be true in my case. I suppose I can't speak for anyone else (though the number of patients at the SCCA dressed in slippers and sweatpants suggests I'm not the only one making these kinds of calculations.)

Passing the Gates

I'm sure you've probably had the experience of parking in a garage or something and driving over those little one way pointy things. As long as you keep moving forward you're fine, but if you try to back up the little pointy things will blow your tires.

That feeling of having to move forward, and moving forward past a set of fixed gates, is sort of how the cancer seems now. 

So, for example, we've worked out that August 31 will be my last day of coming to work as a regular employee. I'll keep working on some projects at home, but the day in day out is now over for me. We're even having an party wake event to mark the transition. This was all totally my choice -- getting through the days is getting increasingly hard -- but there's a part of me that wonders if giving up the obligation to come in every day will prove to slow, or accelerate, my progress toward the end. In the end, there wasn't much choice, and it's just one of those gates you have to pass through.

I've also signed my consent form and submitted to all the scans and tests necessary to see if I'll qualify for this last clinical trial. It's out of my hands now, and will be what it will be. If I qualify, great. I'll be able to help generate some data that may help the docs to figure out the next adjustment to standard colon cancer treatment. If I don't, that will be okay, too. It's just mean that for the first time in twenty-six months I won't be undergoing any treatment. Interestingly, I learned that I can't actually get formal hospice care while on the trial (or getting any other sort of treatment). Eventually, the need/desire for hospice may wind up having more impact on what happens to me than anything else.

I did learn there are some home care services I can get, so I'll start making those calls next week when I'm home. Some of the routine chores I can still do, but only if I allot 3x or 4x the time to account for the naps that will be needed to recover. Thus, I'm thinking that off-loading some of those on a service will actually buy me way more active time than just the time it takes to do the chore. At this point, I can take all the active time I can get.

When I was at SCCA for my trial screening, we also queued up all of the remaining Death with Dignity hurdles. I signed the little legal acknowledgment that I'm not supposed to off myself in public, or alone, or take the drugs out of the state, and I completed the data sheet that will add me to the state's statistical charting. My social worker is setting up appointments to get a second opinion that will certify I've got cancer and am dying, and another that will certify that I'm not so depressed its affecting my judgement. And I've got the written request form that I need to complete, sign and have witnessed. So the plan at this point is to get the two certifications, then see my doctor provide both the second oral request and the written request, they'll have to wait a mandatory 48 hours and then they'll give me the prescription for the killer drugs. 

Talk about your one-way gates.

On the cheerier side of things, I've got tickets to the Mariners. I was never much of a fan, but I've been to a few games, and Safeco Field, despite the political and financial game playing that generated it, is quite lovely. It'll be nice to have a last chance to see a game there.

I've also got my balloon ride scheduled, and even talked two friends into coming with me. So if my fear of heights leaves me in a fetal crouch at the bottom of the basket, they can at least take a few pictures of the scenery.

If all goes as planned, this weekend Sib2 and I will go out for a biplane ride. I've never done that, either, and it seemed like a good thing to add to the list. At that point, all my sky items should be pretty much crossed off. (There will be no sky diving or bungee jumping.)

I'm still working on Alaska, but it looks like we may get a fairly complete family reunion involving my aunt and most of my cousins for Labor Day. I'm excited to see her. She and my Mum were definitely sisters, and we spent most of my holidays growing up getting together with Mum's side of the family. It'll be great to have this chance to see everyone again.

And similarly, my college roommates are coming out as well. We lived together for three of the four years of college, and I don't think we've all been in the same room since we graduated. I can't begin to explain how excited I am by the chance to hang out with them and try to remember what it was like to be nineteen, with most of my life ahead of me, rather than forty-nine (next month), with nearly all of it behind. 

In short, gates. One milestone to the next, trying to make these weeks as meaningful as I can.*

* To me, at least. I think whatever contributions I've made to the planet or society or whatever, pretty much are what they are. I can't really see writing the great American novel, curing a disease, or otherwise having much of an impact at this point beyond whatever it is I've already done. 

The Complicated Calculation of Comfort

I'm not sure if it's old age or chemotherapy, but while I used to have a great mind for playing name that movie/TV show/novel/story, at this point I'd have a hard time pulling the title from clues like spaceships, ray guns, glowing swords, and a planet/asteroid thing that blows up in the end.* This is currently annoying me 'cause I'm really trying to remember a book (movie? TV show?) a read once that had this character who kept describing his desired retirement (I think): he wanted to lie back on the couch and have a woman stroke his head and say, "There, there."

There's probably a lot more to it that I'm not remembering, but I have to admit that after twenty-six months of cancer treatment and a few weeks of cancer non-treatment, having someone stroke my head and say, "There, there" actually sounds kind of nice. 

Well, depending. 

Specifically, depending on who it is doing the there-thereing. Not to put too fine a point on it, but there's a level of intimacy that's required for that scenario to be soothing rather than creepy. If the distance between the person on the couch and the person saying, "There, there" is too great, it's creepy. But if they're close, it's potentially soothing. So, for example: Mother? Soothing. Co-worker? Creepy (and quite possibly illegal). Sibling? Creepy. Sibling, if your last name happens to be Lannister? Soothing. Spouse? Soothing. Ex-spouse? Way too complicated to determine in the abstract. 

You get the idea.

But then there's the other side of the equation.

Take Mothers. Every now and then I have to admit I start wishing my Mum was still around. Mum would've been soothing. Cancer's not quite the same as a skinned knee or chicken pox, but I think Mum had demonstrated that she had skills at soothing. But whenever I start wishing she were still here I think a bit more, and it occurs to me that wishing she was still here is insane. This would've wrecked her. The last thing my Mum ever would've wished for would be to outlast any of her children. She would not have been excited by the opportunity to watch me die, even if she was able to manage soothing. 

Which leads to the core of the problem with soothing: anyone who's actually close enough to be able to be soothing is nearly by definition also close enough that the last thing the cancer patient wants is to open the door to them to let them into the horror show. This is the part of Deadpool that I think resonated with so many cancer patients: the idea that the guy would rather leave his fiance behind than expose her to the experience of his cancer. It's really not an unreasonable approach. One of the saddest things about cancer is how hard it can be on a patient's pre-existing relationships.

And for the cancer patient, navigating those interpersonal distances can sometimes take way more energy than you've got available.

At least that's how I've found it to be. Your mileage may vary.


* Although, in my defense, at this point that description could refer to any of seven different movies.

Can I Consider This a Side Effect?

Here's a question: What do the following movies, television shows and commercials have in common? Cinderella, The DUFF, The Martian, The Rookie, The clip of Simone Manuel winning her silver medal, the Fitbit Father's Day commercial with the dad and his paralyzed son, and about a hundred other things I can't remember at the moment.

Pathetically, they all made me cry. Not like sobs or anything, but in the last few months I've noticed that, more and more, watching TV leaves me with tears running down my face.

Now, the odd thing is that it's not the sad bits that make me cry. Tsunami washes away the village? Yeah, yeah, whatever. Assassin kills a few people? Well, that's what assassins do.

But now a happy ending? That's a completely different story. NASA saves the astronaut stuck on Mars? Tears. The completely uncoordinated kid makes the Olympic team? Tears. The "ugly" girl gets her boy in the stupid teenage sex comedy?* Tears. 

It's getting really annoying.

More important, I'm trying to figure out why. As anyone will tell you, I'm a robot. I do not do sentimental. So having sentimentality become a side effect of my cancer is driving me a little crazy.

I've come up with three theories for why it's happening. 

Theory 1 - Jealousy

Given that I'm headed for an early grave, it's certainly possible that I'm just jealous of these mostly imaginary characters finding their happy endings. I can't dismiss it out of hand, but I'm not sure it feels right either.

Theory 2 -- Something biochemical

What the hell do I know? Given all the drugs I've taken, and continue to take, it's certainly possible something has changed with my brain chemistry. 

Theory 3 -- Cancer sucks so bad, it makes all the good stuff -- even fake good stuff -- look that much better

I've seen enough now that I think I can say with confidence and reason, for the most part life sucks. Yeah, there are the good bits, but those are actually few and far between and the bulk of the time is spent with crap like getting a terminal disease or unexpectedly losing your job or your spouse leaving you or something terrible happening to your kids or or or or. Once you become aware of this, it's a little hard not to be affected by the idea that some girl can get her ultimate happy ending by virtue of the fact that her foot fits a shoe. More people should get their brass ring solely because the shoe fits. 

All good theories, but I'm still working on which bears the most explanatory power. 

Complicating things, I need to expand a bit on that Fitbit commercial. While I will concede that shedding tears over The DUFF is, in fact, fairly idiotic, I will happily own my reaction to the dude in the Fitbit commercial. Given the, ah, vast range of paternal experiences kids can get, the fact that for thirty years this Dad has pushed, pulled and partnered with his immobile son in marathons and triathalons -- because racing makes him feel like "his disability has disappeared" -- is just bloody amazing. It doesn't matter what else this Dad ever does, the world is a better place simply because he's in it. And the son is pretty amazing, too.

The two of them deserve some tears. 


* We're of course talking Hollywood, so calling the girl in this movie ugly is a little like calling Jeff Bezos "poor" because Bill Gates has $40 billion more than he does. 

My Completely Unethical Research Study

I was lying around today noticing how I definitely feel worse today than I did a week ago, and remembering that I felt worse a week ago than I did the week before. From there my mind started to wander and I came up with what I think would be a fabulous idea for a research study that no one would ever be allowed to do.

See, the thing about research is that going back at least a far as the Nazis, but probably further and by no means ending there, you've had a whole lot of people, both well-intentioned and not, who were willing to some absolutely horrific things to other humans in the name of science. Eventually that got recognized as something of a problem, so now there's a raft of federal regulations that folks doing research involving humans have to adhere to in order to be allowed to do their projects.

And while I'm not expert in the human research regulations, I'm pretty sure my study would never get out of the gate. Which is both the right and appropriate outcome, but also a bit of a shame, 'cause it would be interesting to know the results. Anyway, here's what I'm thinking...

You take a group of people that all have the same terminal disease and you separate them into two groups. One group will be told when the treatment path they're on reaches its end point, while the other group will be kept in the dark. The docs would basically lie to them, and tell them that their treatment was still holding the disease at bay.

Here's my two-part hypothesis: first, I would bet that the people who were lied to would, on average, live longer than the people who were told that treatment had stopped working; second, I would also bet that the people who were told the truth would be happier with how they spent their final weeks than the people who were lied to.

One of the challenges with a terminal disease like mine is that you're sort of stuck on this long-term downward drift, the slope of which eventually starts to get steeper and steeper as treatments stop being effective and you begin to progress toward, well, death. But here's where my study comes in. In my case, I've definitely moved onto a steeper slope, but what I don't know is whether that's because the cancer is running rampant and/or if it's because I now know that my treatment options are gone and so I'm expecting to die sooner than I was before and so my stupid brain is causing the erosion of my health to speed up. I could be wrong, but I'd say psychosomatic symptoms can kill you just as effectively as "real" ones. 

And mine is not the only case where I've wondered about this. I remember a friend who died from his cancer last year. He was an amazing fighter. He did everything conceivably possible to fight his cancer -- and bought himself a fair amount of time. But I remember when he was told that all the options had been exhausted. It was like all the air came out of his balloon. It only took a few days for him to go from walking to immobile and just a few weeks before he was gone. The change came so fast, I wonder: was it the disease, or the fact that his doctors effectively took away his desire to fight. 

Seems a useful thing to know.

But as I say, there's no way anyone would ever get approval for a study that involved lying to a bunch of patients about their life expectancy. And thank god for that. I'd actually be pretty pissed, regardless of the reason, if my oncologist waited six or eight weeks -- weeks I could've used to strike a few more items from my bucket list -- to tell me that my disease had progressed to the point where it was time to start getting ready to go. 

Sort of like that old joke: 

Doctor: I've got bad news and worse news.
Patient: What's the bad news?
Doctor: You've got four weeks to live.
Patient: Oh my god! What could possibly be worse than that?
Doctor: We misplaced your test results which came in from the lab four weeks ago.

Some things, I think, patients need to know, even if knowing may make the problem worse. But if any smart scientist out there can figure out a way to design a study that would figure out the effect of knowing you're going to die (soon) on survival rates in a way that the IRB would approve it, you're welcome to my idea. 

I'll Sleep When I'm Dead

It could be Clive Owen's grizzled face staring down from the poster for the movie I'll Sleep When I'm Dead, or Warren Zevon's grizzled face staring up from the cover of the anthology album of the same name, but I have always associated the phrase "I'll sleep when I'm dead" with a sort of poseur aggressiveness that was undoubtedly honed to precision in some PR lab, similar to Nike's "Just Do It" or any of a dozen similar phrases and vibes you find in, say, beer commercials. 

But I have a new theory.

As someone who is dying, but not dead, and who is finding it nearly impossible to sleep through the night, it's possible "I'll sleep when I'm dead" is intended as more of a pathetic acknowledgement that there's at least one actual benefit to dying: you'll finally get a decent night's sleep.

On second thought, it's probably the PR-honed aggressiveness. 

But I can't say I decent's night sleep doesn't sound really nice about now. 

A Brief Update on Kevin (Now with Photographic Evidence)

Now that I've been home for two weeks, I think I have enough evidence that I can accurately report that Kevin has made the next leap forward in her bid to become The World's Most Affectionate Cat. 

When we last left Kevin, she had grown very attached to a sitting body, but had little interest in a lying down body, and was clearly terrified by a standing body. At this point, however, while the sitting body is still her favorite, she's also grown very fond of the lying down body and will actually tolerate a standing body. 

All this leads to great fun as the abdominal pain prompts me to lie on the couch for awhile, then move to the chair for awhile, then back to the couch, as Kevin inevitably follows in my wake making herself comfortable in my lap or draped across my chest.

And while I can't say that cuddling with a cat is as good as cuddling with a human, it does have one definite advantage: humans, as they adjust to find a comfortable position, don't typically misjudge how much space they have and wind up falling on the floor. 

Which is hysterical. 

Kevin and I in the chair

Kevin and I (and my feet) on the couch

Some Initial Next Steps

While I can't say I've completely come to grips with last Thursday's news (does anyone? ever?), I have come to some conclusions about some of my initial next steps. Lacking anything better to write about, I figured I'd share...

First up, I have reviewed the details in the consent form, talked with my doc, and decided I'll go ahead and throw my hat in the ring to participate in a clinical trial of something called Xilonix. which "represents a paradigm shift in cancer treatment" (hahahaha). Industry PR aside, it's Xilonix is a monoclonal antibody that (remember: I am not a scientist) tries to turn off one of the proteins cancer cells rely on. The trial is designed to see both if the drug works to hold back cancer, but also to see if it does so without as many of the side effects as some other treatments. My doc isn't really convinced on the former, but he does think there might be something to the latter.

Fair enough. I can always do with fewer side effects. More important -- and this is really the reason I'm willing to sign up -- the reason I haven't spent the last two years being treated with fifty year old technologies is that a whole bunch of cancer patients before me signed up for trials of all the drugs I've been taking: Irinotecan, Xeloda, Lonsurf. And frankly, I owe those people a debt. As shitty as my treatment has been, it was a whole lot worse back in the day. Unfortunately, I can't really do much for the folks that came before me, but I can do my bit for the folks that will inevitably follow. And if the data from my use of some experimental drug will help the docs figure out the next progression in colon cancer treatment, they're welcome to it.

Of course this assumes I meet all the inclusion criteria. And even then, there's a one in three chance I'll be given placebo rather than the drug, which would be slightly disappointing but a) control data is as important as experimental data, and b) I'll never know which I'm getting anyway. 

So that's my progress on the health side of things. I've also had progress on the work side of things.

I used to always joke that, given my age and lack of retirement savings, my "retirement" would be the ride in the ambulance from my desk at work to the hospital when I had a heart attack and died. But while it's coming a hell of a lot sooner than I expected, my boss and I have figured out a plan for something of a retirement-lite. In short, I get to whittle my job down to the parts of the work I like (e.g., system development projects and finding work process efficiencies) and offload the parts of my job I don't like (e.g., approving time cards) to the people that were going to have to take it on eventually anyway. 

A brief aside: The timing proved somewhat perfect. While I was in the UK, I got an email from a contracting officer in the Department of Health and Human Services with a contract. Of course, I ignored it until I got back and then passed it on to my group to process. All federal contracts are, simply by their natures, horrendous,* but this one was particularly so in that, aside from my name and my employer's name, there was no other meaningful information in the paper. The "project name" was the name of the Federal funding program, not our project. There was no reference to our proposal at all. The Feds just pulled my name out of the online contracting system, slapped it into a template document, and sent it out.

So anyway, it took about two weeks for my group to figure out what this was for, and reach out to request the other documents we needed to get this thing processed. 

So today I get an email from the original contracting officer asking if we'd made progress with our review. I wrote back explaining that we have a backlog, but it was queued up to be processed.

About ten minutes later I get another email from a different contracting officer explaining that a two week delay in signing, excuse the language, a fucking federal contract, was "unacceptable." 

And then a few minutes after that I got a voice message from a third member of the Federal team amplifying their position that a two week delay was unacceptable, and making clear that I needed to get my shit together and get the contract signed and back to them asap.

Deep breath. Deep breath. Deep breath.

I started working on an email that began, "Dear Everyone, It's because of people like you that Donald Trump is a viable candidate for President..." but then I thought a) that in all likelihood at least one of them would see that as a compliment, b) I really didn't want to spend one of my few remaining hours on the planet writing a nasty gram to the Federal government,** and c) while I don't give a crap about this $90K contract, no doubt someone in our organization cares a lot about, and it didn't seem prudent to do something that would cause the Feds to take their ball money and go home. 

But dealing with this kind of shit definitely falls in the half of my job that the folks who will be replacing me can take on right away. Like tomorrow. 

Ok, what other next steps have I figured out? Oh yeah, ballooning. Apparently, it's a big thing in Seattle. Big enough that I spent fifteen minutes talking about my gift certificate with a company that didn't actually issue the gift certificate. (I figured there was only one company, so went to the place I knew.) Anyway, we got that sorted -- and the woman was very nice -- so now it's just a matter of getting all the people who want to go coordinated (the hard part) and scheduled (an easy online calendar thing). 

And trips. I'm thinking Alaska very soon (i.e., before the weather changes), and NYC shortly thereafter. They won't be long trips, but both are places I've been meaning to see and both are close to people I'd like to see again as well. So with luck, I'll have that nailed down in the next week or so as well.

All in all, except for the bit about dying fairly soon, I have to say my life's going pretty well. 

* Feeling masochistic? Try Googling "federal acquisition regulations" and dig in.

** Not only would that be a waste of time in and of itself, when my Dad died we found a number of angry letters he'd written to Bill Clinton and others. We're doomed to become our parents, but this just seemed a little too close for comfort. 

Forty-Eight Hours Later

Having spent the last two days processing -- and by "processing" I mean driving around with the top down listening to Tom Petty and/or lying on the couch binge watching SyFy series* and/or lying in bed with a pillow over my head -- I can definitively state the following:

This sucks.

The funny thing is, it's not like it was unexpected. I know there were folks that were expecting a miracle, but that was never me. I might've clearly had unreasonable expectations about how long I had, but I always figured the cancer was gonna kill me. But even knowing it was coming, actually being told the cancer's going to kill me -- and relatively soon -- has thrown me.

The weirdest part is that it's like hearing the news has made me a totally different person. Very little of what I thought would be true about this moment has turned out to be true, and, truthfully, I can't really muster the energy to care. I think it's fair to say that I'm going to die with the window trim in the bathroom needing to be painted. (It's probably also fair to say that that particular outcome was genetically mandated from the start.) I was also thinking I should be a new computer since this one is a viral mess, but I can't see spending any of my final moments figuring out Windows 10.

Speaking of which, I have figured out that the question I asked in my last post is the wrong question. The question is not, "How do you want to spend you final weeks?," but rather, "What do you want to do next?" It could just be psychosomatic -- hey, you're dying; okay, I guess that should probably hurt -- but the pain I'm experiencing is already ratcheting itself up. My doc gave me a scrip for Oxycontin, and for awhile I was hesitant to take it, but, as of ten minutes ago, the hesitancy is gone. But it does go to show that it's anyone's guess how these remaining weeks are going to play out so long term planning probably isn't the right strategy. Instead, I'll focus on what's next. And then next. And then next.

Next, I think, is a balloon ride...


* Lesson learned: if you're terminal, do NOT binge watch any series that SyFy produces, unless the series has been cancelled. Every freakin' season of every freakin' show ends in a f'ing cliffhanger. 

Hmm... Well... Okay Then...

This is the point in our story where the NASA mission fails and everyone realizes that there's no way to stop the asteroid from hitting the planet and we're all going to die; where, down by four but standing on their opponent's four yard line with seconds on the clock, the quarterback throws an ill-considered pass and in so doing transforms a win that seemed inevitable into the impossible; where the hero says, "I've got this," but winds up lying in a pool of his own blood.

In short, this is where I stop being treated systemically for cancer, and start being treated for the secondary symptoms.

Even shorter, this is where we give up.

To expand slightly, here's where things now stand...

All the tumors in my liver that I had, I still have, but now they're bigger. They also have some new friends. Similarly, the tumors in my peritoneal wall have also grown and multiplied. And, finally, it turns out the probe did find a new tumor in my colon, which is potentially contributing to my "slow" digestive tract, though the fact that I've got a pretty serious cancer problem throughout the area isn't helping things any.

From this, we can draw some immediate conclusions. First, the Lonsurf is done. I got my two to three months out of it, but it's clearly no longer working so there's no reason to keep taking it. Second, some of the more aggressive liver treatment options -- e.g., radio-frequency ablation -- are pretty much off the table as well. I was always an iffy candidate at best anyway, but now that the cancer is springing up in my abdomen, there's no reason to go too nuts on the liver. Or for that matter, anything else. In my case, we have to think systemically. 

And just as an aside, I had to laugh when, as we were talking about options for dealing with my now chronic constipation and abdominal pain, my oncologist brought up the option of applying low level radiation to my rectum to try to reduce the size of the new colon tumor, in case that was the cause of the problem. Oh yeah, that's how I want to go out, with massive inflammation of the ass as a result of radiating it. 

No. Just no. 

But that leads us back to an important point, which I've stated here repeatedly but is always worth repeating. As my doc put it today, he said, if you were a typical patient, there are things I could do. I could find a phase I trial or put you on some of the other third tier drugs, and maybe buy you a couple of weeks. But you'd pay for it. You'd be back on regular infusions, and back to dealing with the worst of the side effects. But, he said, you've made it pretty clear from the beginning that, for you, this was all about quality of life. And without making you miserable, there's not a lot left in the repertoire.

And in my designated role as the little black rain cloud, I should mention to all the folks who were referring me to a new study on an immunotherapy "miracle" drug that just opened up in Spokane, now that I've learned more, "miracle" seems like it might be a little strong. Yes, 20% of patients responded to the drug in the Phase I trial -- and a 20% response is definitely a big deal -- but that was based on a patient population of 25 (i.e., 5 out of 25 responded). That's not much of a sample. More important, though, the response of those five lasted, like, forty-five days. After a month and half, the tumors started growing again. Hard for me to see moving to Spokane and going through side effect hell (never mind the one in three chance I'd be put in the control group which takes a very nasty drug) for a potential pay off of six weeks. 

Anyway, to try to return to my larger point -- I'm sure I left it somewhere -- as my doc rightly noted, when I started this ordeal I committed to a game plan that would prioritize the quality of my days over the total number I had left. And for the twenty-four months I've been going through all this, I have to say that strategy has worked pretty well for me. I got to see penguins in the wild, ride motorcycles through the jungles of Vietnam, introduce my niece to raw oysters, and my nephews to steak tartar. 

Seems silly to change my approach now.

So while I always reserve the right to change my mind, for now that's how I'm going to play it. My doc's going to have his team send me a couple of trial options to consider (one he likes is all about improving quality of life, and doesn't even have extension as a goal), and we'll see. But absent one of those jumping out at me, everything we do from here on out will be focused on controlling the secondary symptoms of the cancer.

So while it came a lot sooner than anyone expected, my appointment today ended with my first formal request for access to some killer drugs under RCW 70.245. 

But now comes the hard part. Realistically, we're now measuring my remaining time on this planet in weeks. What would you do with your last weeks on Earth?

Yeah, I don't know either. Difference is, I need to decide, quickly. 

Should I Be Pleased or Frightened? Perhaps Both

Tomorrow is my check-up with my oncologist, so yesterday I got scanned. But the scan was the least important -- to me, anyway -- part of the appointment. The important part of the appointment came right at the start. When they weighed me. 

In the thirty-three days since I was last weighed, I've lost twenty pounds. I was 249.5 pounds on the 7th of July, and I weighed 229.5 pounds yesterday.

I'd be lying if I didn't say part of me is pleased. Frankly, I could stand to lose another twenty. Although how many pounds I've got is probably less of an issue than the fact that not an ounce of any of them is muscle. 

But that's the vain part of me. The smart part of me is more than a little worried. No one loses twenty pounds in a month without trying unless there's a problem. I can try to persuade myself that I lost the weight as a result of all the walking we did in the UK, but, yeah, no. I've taken plenty of trips that've included plenty of walking and not one of them came with a twenty pound weight loss.

The likelier answer is the lack of eating that started on the trip. Which is all well and good, except I'm not really sure why my appetite disappeared.

More important, I'm not sure how to get it back. 

I hope my oncologist has a few ideas, or I'm going to waste away (after I lose another twenty or thirty pounds). I guess I'll find out in the morning.

Eventually, Cancer Makes Liars of Us All

Our first liar: Me.

I've written before that I consider myself to have a high tolerance for pain. I need to revised that opinion, as I was clearly deluded. After two weeks of chronic abdominal pain, I've decided I have no tolerance of pain. At all. Pain sucks. Pain that you can't do anything about sucks even worse. And pain that you can't do anything about that leaves you lying on the couch doing half-assed impersonations of a Lamaze class is pretty much intolerable.

It would seem I have no tolerance for pain at all. 

Our second liar: My providers.

I realized things change quickly, and all my providers are doing their very best with a very limited basis for modeling, but if they can't figure out a solution to this pain problem, the prognostications that I have many months left, I guarantee you, are going to be proven wrong. Even worse, they've got to find a way to solve it without relying on painkillers. Everything I've read tells that when it comes to terminal illness, starting up on painkillers is as good a marker for the start of the final phase as anything.

We'll see on Thursday, but "many months" is feeling awfully optimistic at this point.

Our third liar: Taro Gomi

Everyone poops, my eye.

I'm Really Hoping I Can Claim PTSD

My return from the UK/Ireland leg of the GCW Tour has been a challenging homecoming which ran something like this...

Sunday -- jet lag day. We took off at 9:30 am London time, flew for some nine and a half hours, and landed in Seattle at 11:30 am Seattle time. I made it to about 7:30 pm before I gave up and went to bed. 

Monday -- agonizing abdominal pain day, number one. The obvious question is, was this new pain, or continuing pain? Unfortunately, I can't say. I was sort of busy in the UK, so I'm not sure if I was in pain or not. I sort of blocked it out. But Monday was pretty hellish.

Tuesday -- agonizing abdominal pain day, number two. By Tuesday the pain was so bad that I only lasted an hour and a half at work, before I gave up, went home and started downing pretty much every variation of stomach relief I could find. It didn't really help, so at 11:00 I sent an email to my providers at the SCCA. At 4:00 they called me, asked a few questions, and then sent me to the ER. 

After a couple of hours and some routine checks, the ER docs gave me Dilaudid, which was quite nice. Then, after a few more hours and a CT scan, they gave me a pint of magnesium citrate, which was a lot less nice, but between the two the abdominal pain was pretty much eliminated. At least for the time being.

Wednesday -- my first vaguely normal day in a while. You gotta take 'em where you can get 'em. 

 

Thursday -- mental health and return of abdominal pain day. A few weeks ago my provider team was worried about my mental outlook and so an appointment with a psychologist was scheduled, but, given the demand, it takes awhile. Today was the day. It was an interesting conversation, which I'll get back to, I'm sure, at some point in the future. Unfortunately, the abdominal pain also started back up again.

Friday -- probe day. We will skip the details of the sigmoidoscopy, and just summarize by saying that it's definitely one of those experiences you can be born, live your life, and die without experiencing, and you will be better off for it. And, unfortunately, it's one of those terrible experiences which ends with a doctor giving you a bunch of substantive information while you sit there trying to get over everything that's just happened. Thus, there's a very good chance I misunderstood what was being said.  

But here's what I heard:

1. I either do, or do not, have a tumor near the end of my colon. At one point I though the doctor said he saw a tumor, but then he didn't take a biopsy which I sort of would've expected. So who knows? I supposed I'll get clarity next week when I see my oncologist.

2. I either do, or do not, have an irritated section in my colon. It looked irritated (i.e., bloody and nasty) on the TV to me, and I thought I heard the doctor make comment about it, but I could be confused.

3. This one I'm really hoping I misunderstood, but I'm pretty sure I was told that my colon has essentially stopped working. It's a very odd experience to be told by a doctor to avoid vegetables, but that's what I heard. Eat only protein, avoid fiber in any form, be prepared to suck down industrial grade laxatives on a regular basis, and get used to the abdominal pain.

In other words, the last few weeks weren't an anomaly. There's no problem that can be fixed. This is just the new normal.

Or I was suffering PTSD and misunderstood everything that was said.

I do really hope that's the case. It can't bode well to have a non-functioning colon, and too many days like Tuesday would definitely prompt a desire for the immediate acquisition of some killer drugs. 

In short, not my best week in recent memory.