This is my blog about my cancer ("my cancer," like it's a pet or a hobby). I'm starting it because I'm fairly lazy and repeating the same stories over and over as friends and family ask about the latest development seems really inefficient. This also gives everyone access to the same source material, thus minimizing the "telephone" problem. We'll see if it works and how long I bother to keep it up...
Bearing in mind that I can attest only to my own anecdotal experience with Lonsurf and, moreover, that that experience is based on just a single month (i.e., five days taking pills, two days not, five days taking them again, and then sixteen (four so far) off) on the drug, here's what I've found to be true about Lonsurf.
Your mileage may vary.
On the good side, the pills are small and so they're really easy to take. I've even dry swallowed them a few times, though it's not recommended. After a few months on the Xeloda I reached the point where I could barely choke them down, but the biggest worry with Lonsurf is that you'll drop one and lose it.
So much for the good side. Now let's run down the bad. In no particular order...
While it's not as bad as what you get with the infusions, fatigue is again an issue. I'm back to being tired, and being tired of being tired. Since it's only been a few days since the first round ended, I can't say for sure that the fatigue won't recede during the next fourteen days. If it does, yay! If it doesn't, boo! But in some ways it doesn't really matter a whole hell of a lot since my next two trips will both coincide with the days I'm taking the drugs. I start taking the pills on the day we leave for the cruise, and the start them again a week into the Great Britain trip with the older boys. As they say, timing is everything.
I haven't noticed any affect on my fingers, but the neuropathy in my feet seems to be worsening. My toes are number, the weird tingly sensation goes back further, and occasionally the whole mess hurts. More problematically, I'm noticing an increase in my instability. These days, I stay pretty close the hand rail when going up or down stairs.
I can't say with 100% certainty that it's a result of the Lonsurf, but I have this very strange craving for iced tea now. I'm drinking the stuff by the gallon, and it's not usually my preferred beverage. (And for the diabetes-knowledgeable in the audience, it's not high blood sugar. I checked.) Go figure.
Next up we have, well, how shall I put this? Let us say, a new level of intensity to the gastrointestinal distress that has been my constant companion since the original cancer diagnosis. Unfortunately, while to this point the problem has basically been that my digestive system was disgusting, now it's less disgusting but a lot more painful. Since starting on the Lonsurf I've been in at least some level of pain pretty much constantly, and when my guts start churning it feels like I'm being stabbed. Not my favorite feature of the drug, to say the least.
Last, but not least, we have -- rather, a few people have suggested I might, perhaps, possibly, though it's not a definitive thing but more like just something potentially worth considering, i.e., the idea that maybe the Lonsurf might be causing a mental defect which I cannot actually identify by name because if I identify it as something I potentially have and then the wrong party noticed my blog, it could prevent me from acquiring the drugs I'll eventually be wanting pursuant to RCW 70.245. So just to be clear, the only condition I have that's relevant under RCW 70.245 is terminal stage IV cancer.
But I can't promise that someone taking Lonsurf might not find themselves feeling a little, uh, blue. Of course, the potential causal linkages in this particular scenario are a little too numerous to make it possible to reasonably assign blame.
Regardless, best of luck to anyone else starting up on Lonsurf, which certainly seems to be making its way into the pharmaceutical company nirvana known as "standard of care."
Somewhere in the last few weeks I think I reached the ironic inflection point of my journey with cancer. This is to say, though I'm not dead yet, I'm actually starting to wish I was. The effort it takes to keep moving forward is more than I can muster anymore, and none of the things that were pulling me forward before have the force they once did.
Not to put too fine a point on it, but I'm ready to be done.
And yet here I am. Still marching along. Still pretending like there's reason to be hopeful or reason to bother getting out of bed.
Oh well. It can't last too much longer, I wouldn't think.
...Just a little tired and a lot grumpy. Unfortunately, writing while grumpy is sort of like driving while intoxicated: you might get through it okay, but the odds aren't good. So I'm refraining. But I'll get back to it shortly. I promise. In the meantime, here's another video that seemed appropriate...
So I've mentioned before that one of my goals for the GCW Tour was to drag my youngest nieces and nephews out into the world. I get a travel companion, and they get a chance to see places that probably wouldn't be available to them otherwise. Hence, the trip to Spain and Morocco that the niece and I took last summer. Unfortunately, the fact that I'm not really likely to be here beyond this summer has put some additional pressure on my travel planning. In short, what I had originally thought to be individual trips, are going to need to be turned into some combined activities if I'm going to get through them all. I've got three nephews left, but I sure as hell don't have three summers left. So it's this year or likely never. And so here we go... The two eldest nephews were the easiest. They're fifteen and seventeen, get along pretty well, have some reasonably resonant interests, and so they should be okay traveling together. Of course, one plays french horn (so something like that) in the symphony, and the other is part of the drum line, and August is band camp month, so travel with them had to take place between June 17 when they get out of school and August 1 when camp starts up. Additionally, one's got celiac, which requires a complete avoidance of any foods (or drinks) containing gluten, which requires a) knowing the word for gluten in whatever the local language is, and b) having a reasonable expectation that if you ask for food without gluten in the local language they'll both know what you're asking for and be able to accommodate. It will perhaps come as little surprise, then, that we landed on Great Britain. Since the English word for gluten is "gluten," and England, Scotland, and especially Ireland, have pretty good reputations for doing the gluten-free thing, it seemed a good choice. Plus, I've seen nothing of Great Britain except London, so this checks off some of my desired destinations (and let's me search Ireland for an "Irish pub"); one of the nephews is a history buff, so we ought to be able to find a few things of interest to him; and the other's a rock and roll buff, so, again, points of interest should be pretty available. It's a win-win-win. Now we just have to definitize some plans and start making hotel reservations during the highest of high seasons for travel, before everything (left) fills up. With luck, the boys are researching now, so when I head to their house on Saturday we can start the booking process. (Feel free to leave any suggestions for what to see in England, Wales, Scotland and Ireland in the comments.) So that leaves the eight-year-old. The challenge with the eight-year-old is that the Venn diagrams of an eight-year-old's interests and a forty-eight-year-old's interests look something like Harry Potter, a minion, or the Tootsie Pop owl:
That is to say, two big barely touching circles. Hence, I was having a really tough time figuring out what we could do that would be both fun for me and for the eight-year-old. Enter Walt Disney.* Did you know that the Walt Disney Company owns four cruise ships? What's more, from time to time one of those cruise ships will go to some really interesting places. In fact, on June 17 one of their boats will be sailing from England to Scotland to Iceland to Norway to Denmark. And unlike nearly every other part of the travel industry, cruise tickets actually get cheaper the closer you get to departure. This June's cruise was about half the cost of the same cruise next year. So for not a huge amount of money, the eight-year-old gets to spend thirteen days on a gigantic boat designed with an eight-year-old in mind, and I get to add Iceland, Norway and Denmark to the list of countries I've seen. Seemed like another win-win to me (even if it does mean I'll be trapped on a boat with a much higher ratio of children to adults than I'm used to). Oh, yeah, we're also taking the niece along so that if the Lonsurf lays me flat -- or, more likely, I decide I need to spend an hour in the bar -- there will be someone else to ensure he doesn't fall overboard and has a good time. It seemed a prudent choice. In any case, here's to Walt's ability to create Venn diagrams with overlap.
Lonsurf. Although it sounds like that new TNT original programming wherein Don Johnson plays a grizzled bartender who lives at the beach, occasionally solves crimes, and is seen at least once an episode dragging an ancient surfboard out of the waves,* it's actually the name of my new cancer drug. It's a combination of trifluridine and tipiracil and is manufactured by Taiho Pharmaceuticals. The good news: the pill are a lot smaller than the Xeloda was. Those things were horse pills, but these I keep fearing I'm going to lose. They are tiny. The bad news: these things are freakin' expensive. Retail cost on a three week cycle of Xeloda was roughly $3K. I haven't seen the EOB yet, but I'm told the monthly cycle of Lonsurf is $13K. (Let's hear it for good health insurance.) More good news: you take the pills on this weird five days on, two days off, five days on, sixteen days off cycle. As far as I'm concerned, the fewer days I'm taking pills the better. More bad news: you take the pills on this weird five days on, two days off, five days on, sixteen days off cycle. You should see the kit the manufacturer gives you to manage all that. It's this weird blue briefcase that's about 9x12x3 (i.e., bigger than many laptops) and inside it is a manual (literally, I think my car manual is smaller) providing everything anyone could ever want to know about the drug, although in my case, I don't actually want to know anything about the drug (as noted previously, I'm a terrible cancer patient) so it's completely superfluous; a thermometer, because everyone's really worried about infections and fever; and these two enormous, week-long drug trays, each including four slots that don't actually open (since you're supposed to take two days off), and ten slots that you're supposed to fill with your morning and evening doses (more on that later). The pharmacist handed me all the stuff, and I just laughed. There is absolutely no way I'm carrying all that crap around. Still more good news: as noted previously, I don't have to use a mail order pharmacy to get this stuff. I can just pick it up at the SCCA. Still more bad news: holy crap, but the SCCA loves their pointless packaging. My little tiny pills come twenty pills to a bottle in this smallish white bottle. Since I need eighty pills, I get four bottles. Each of those four bottles, then, goes into a larger, standard, clear amber prescription bottle. Those four bottles go into a zip log baggie, with a nice chemotherapy warning on it, and then that bag goes into a paper bag so no one can tell what you're holding. The crazy part is the pharmacist tells me that they want me to keep the pills in all this packaging, pulling them out only as I need them to take them. First, so why on earth are you giving me a briefcase with two pill trays when using said pill trays would require me to open everything up to fill them? And second, are you insane? I'm not carrying all that crap around with me. I'm going to open it all up, concatenate the pills into just one of the small bottles, carry that bottle, and throw all the rest of it away. And now the really bad news (I've run out of the good): so this is a new drug, which means the doctors don't really know what it does. I asked the pharmacist how long I could expect to be on it, but he just kind of looked at me wide-eyed, said they didn't know, but mentioned that the SCCA has had people on the drug for three or four months. When I say new, I mean completely new. Moreover, this means the side effects are also unknown, and I noticed a fair bit of crazed planning around this fact from the health care providers. With the Xeloda, they just prescribed it and sent me on my way. With this stuff, I've got a follow-up call next week, a follow-up visit the week after that, and then they want to see me the week before my next trip (more on that later) to make sure they don't have to do a blood transfusion. Wait. Back up. Blood transfusion? Yup. It seems this stuff basically screws with your white blood cells, red blood cells, platelets -- basically, everything in your blood -- so it's very possible I'll need a transfusion. Fair enough. As long as it doesn't screw with my travel plans, they can transfuse me if they want. I guess... Which leads to the really, really, really bad news: I think it's fair to say that my hopes for a tattoo have now officially died. The PA made it pretty clear that Lonsurf is not only going to screw with my blood, it's also going to cause uncontrolled bleeding. Nose bleeds, random bruises -- if inappropriate bleeding is involved, Lonsurf will cause it. Which means getting jabbed in the arm with a needle a few thousand times while on this drug is not going to be the wisest of choices. And since going off the drug will very likely be followed in very short order by dying, I think it highly unlikely that I'll manage to get inked. Ah well. Such is life. Someday I'll post the design I was going to get here, in case anyone else wants to use it. But I'll wait until I'm sure I'm going to stay on the drug, so I won't ever be able to get the tattoo. I'd hate for someone to steal my idea before I was done with it. * To the best of my knowledge, not a real show -- at least not yet.
How best to put this? By most normal standards of the word, I'm rich. Sure, by the standards of Bill Gates, Jeff Bezos and all their little mini-mes, I barely move the needle, but that's hardly a reasonable point of reference. I prefer to be reasonable.
And reasonably, I have no doubt that it probably frustrates the shit out of a lot of the people reading this when I write about the options and opportunities that are available to me as a result of the resources that are available to me that aren't available to the vast majority of Americans (nevermind the rest of the world). I get that. Completely. I have great health insurance that pays almost the entire cost of $30,000 worth of chemo infusions, and nearly $1,000 a month in diabetes care, and doesn't blink at the bills for my conversations with my palliative nurse or other mental health consults. And, honestly, I don't know what to do when I talk with my cancer colleagues who are struggling with their care, fighting with their insurer over every scan and every consult. I can't change their coverage, and I can't personally cover the gaps. It seems all I can do is acknowledge my privilege, and fight where I can for change. And I'd be the first to agree that this is the very definition of the word "inadequate." Similarly. I think I've told the story here before of the roofer I heard about who was going through the same chemo I did after my diagnosis. The only difference is that while I had a job that provided me with paid leave in a variety of flavors, his job didn't. So he'd get his oxaliplatin infusion, get connected to the forty-eight hour 5FU pump, and then go back to work, climbing out onto rooftops to lay shingles. And he's far from alone. One of my cancer buds runs a housecleaning business. So while I got to spend my infusion days in bed, she got to spend hers cleaning her clients' houses. How is that remotely fair? And then, of course, there's the money. Again, I'm no Bill or Jeff, but I make what any normal person would recognize as some serious coin. More importantly, during the four or five years preceding the cancer diagnosis, I had exactly nothing to spend it on. As the XS was extracting herself from our marriage, it's not like she wanted to spend time with me, so a whole set of expenses just disappeared. And while she took half of what we had with her, I am genetically predisposed to be cheap, and so I wound up in a small condo, with nothing to spend my money on, making the above-referenced serious coin. As the oft-quoted equation goes, "Kids, time or money -- pick two." I didn't even bother with two. I just went with the money. And I will be the first to admit that that has made everything I've dealt with vis-a-vis the cancer monumentally easier. In fact, even the divorce made it easier. Talk with people dealing with cancer, read about people dealing with cancer, go see movies about people with cancer, and there's one theme that comes up time and time again. Unlike me, the thing that the vast majority of cancer patients are most concerned about isn't the cancer, and it isn't dying. The thing they're most concerned about is the people they're afraid they may be leaving behind. And as a result, they work their asses off trying to accumulate whatever they can with the time they have remaining so their families will be able to keep their world afloat if/when they're gone. And that is not a problem I had to deal with. I could piss my money away on the GCW Tour because I didn't have a spouse worried about how she'd eventually make the house payment, kids worried about how they'd afford college, or anyone else relying on my income to keep up with the Joneses. I only had to worry about me. And while in some ways that was a bad thing -- if there's anything that makes you wish you had someone to hold onto, it's chemotherapy -- in other ways it was a luxury. A luxury I had that the vast majority of people don't. And again, I am very aware of that fact. So why am I posting a rumination on money and privilege in violation of all the social constraints that say we're not supposed to talk about this stuff? There are a few reasons, but mostly it's because y'all are smart people, and it doesn't take a genius to see in my posts that I've had resources available to me that most people don't. I'm also a firm believer that people should acknowledge their advantages, even -- or maybe especially -- when it's not possible to effect change that would make the world more just. (Don't get me started on the subject of luck.) Moreover, it's become clear to me that the visibility of my advantages is about to become orders of magnitude worse. Simply put, I'm about to start spending money like there's no tomorrow -- because for me, there isn't -- and as I write about what's going on in my life as I rush toward the exits, that's going to be a really hard fact to hide. In short, what I have now is money, not time. If I could wait until next summer to go, I could get a ticket to Europe for about $600. But since I can't wait, that same ticket's going to cost me in the neighborhood of $2,100. If I was worried about my job, sick parents, retirement, how my family was going to survive without me, or any of the millions of other things that proscribe most people's options, there's absolutely no way I'd pay that premium. But I'm not, and so I do. And I do it knowing what a luxury that is, and how privileged it makes me. (But on the flip side, I am doing to die before I reach fifty. That part kinda sucks.)
Perhaps not surprisingly, the one question I'm hearing now more than any other is, why are you still working? I have to admit, it's not an unreasonable question. Given the limited time I've got remaining, do I really want to spend it working? Like most things with me, the answer's somewhat complicated. As I've written, I've been half-heartedly pursuing long-term disability and an early payout on my life insurance for awhile now, but haven't been able to muster the energy to actually fill it out. The problem, I think, is the unreasonable hope thing again. If I fill out the paperwork, my doctor signs it, and the insurance company pays out a bunch of cash based on the premise that I'm going to fall over dead in six months, that makes it pretty undeniable that I'm going to fall over dead. As stupid as it sounds, I find there's comfort in the deniability, even if it's not in my long-term interests. I think that's partly why I haven't actually pulled the trigger. Then there's the deer in the headlights problem. This comes up a lot with cancer (even if you aren't actively dying), and probably health care more generally: the doctor says something like, "surgery is now our only option" or "the scan shows X" or "I'm sorry to tell you that you've got Y," and your brain just shuts down. The doctor's yammering on about the implications of what they've just told you, and you're still back at the start of the conversation processing the unprocessable. It's a problem. I do think there's been an aspect of that for me for the past few weeks. I knew the scan wasn't going to show an ironic miracle cure, but even expecting bad news, actually getting the bad news has been hard to process. So you don't. You just get up and go to work and wander down the established pathway through your day. Dealing with reality, and actively making choices, requires more than you've got, so you just rely on habit. And then there's the ironic bit. I've read a fair number of stories about terminal patients who, at the very end of their days, get this sort of miraculous second wind. Grandpa's been semi-conscious for the last six weeks, barely hanging on, and doing nothing but lying in bed, non-responsive, and then suddenly he's sitting up. He's engaging with the people around him, and it seems like a miracle's happened, and then two hours later he's dead. I think I'm having a similar experience at a more macro level. To be clear, my professional life is basically over, in that it's hard to have a professional life without a biological one. I'm aware of that, and have (mostly) reconciled myself to that fact. And yet. Over the last few weeks, I've found myself wanting to start a ton of new projects at work: building new data visualizations and dashboards that would make things easier for groups to get things done; creating new operational procedures eliminating stupid* work so folks have more time to work on the things that matter; creating training manuals for work that only one person knows how to do; etc., and etc., and etc. There's just so much to do, and while I work with great people who are more than capable of getting these things done without me (even if they may not want to), it's just more fun to be a part of it. Of course there's also the fact that I am one of those people for whom "work" and "life" aren't really separate concepts. There isn't much of the latter without the former.** As weird as it sounds (even to my ears), to step away from the job is, in some ways, to die. And I'm not ready for that yet. And so I continue to get up in the mornings and go to work. But I can't really deny the fact that the clock is running down for much longer. Everything I've read, seen and heard tells me that the inflection point is going to come out of nowhere. Cancer is not a long, slow decline from active to dead. It's a long, slow decline from active to marginal, and then an absolute free fall from marginal to dead:
Thus, I can't really afford to wait until I "feel like I'm dying" to do the things I want to do, 'cause by then it'll be too late. In some ways, it may be already. I was looking at the calendar today, making plans for the next legs of the GCW tour, and it became pretty clear that time is running out. Lots I still want to do, but not a ton of time left to do it. So, yeah, why am I still working? * Examples of stupid work include things like: typing a number that someone else previously typed because the system they typed it into can't talk to the system you need it in -- and then having yet another person who needs that number retype it yet again 'cause your system won't talk to theirs; calling or emailing someone to ask if they're done yet; spending twenty minutes doing the work necessary to document that you did something when actually doing that something only took you five minutes; etc., and etc., and etc. ** Ryan Avent, a writer for the Economist, had some really interesting thoughts on the new ways work and life are connecting. You can find his article here.
So I got a nice call from my oncology team today. Seems that the Idiot Intelligent Insurance Company will cover 100% of the cost of my new drugs, and I don't even have to use a mail order pharmacy to get them. I can just pick them up from the SCCA pharmacy after I meet with my doctor or PA. Finally, something goes my way. But I feel bad. I was talking with some fellow cancer patients the other day and the conversation turned to these appalling tales of conflict between health care providers on the one hand and insurance providers on the other. None of it was unfamiliar to those who pay attention to this sort of thing: a patient not receiving care because a given provider is "out of network"; treatment options being determined not by what's best for the patient, but rather what's easiest to get approved by the insurance company since the patient can't afford the delays in treatment an insurance denial would create; zero transparency over the reasons behind the decisions that were being made, leaving the patient to guess as what's going on with their care. I'm sure most of us could narrate very similar stories. It all just makes me angry (hey! the second stage...) and sad. Despite what Donald Trump says, America is one of the richest nations on the planet, and yet this is how we take care of our people? Uninsured and unable to afford care. Insured, but marginally so, and thus locked into a continuous battle with an insurance company over what's covered versus what's not. These are not categories of being that any of us should tolerate. And yet we do. We even tell ourselves that this is the best of all possible options -- well, some of us with gold-plated coverage plans do. As occasionally frustrating as it can be, I am consistently grateful for the health insurance I have. It annoys the crap out of me that others should have very good reason to be jealous of that coverage. We can, and we should, do better.
I think I've written previously about Kevin's transformation. The cat that originally wanted nothing to do with me and would climb up into the box springs under my bed to get away from me, now won't get out of my lap. And, in fact, it usually takes about thirty seconds from the time I sit down for Kevin to find me and climb into my lap. I'll come home, climb the stairs, look into the bedroom and see Kevin sleeping on the corner of the bed, put my crap on the table and sit down to take my shoes off, and here she comes, running to climb into my lap. If I put her down in an effort to get to my shoelaces, she'll throw a U-turn and climb back up. My PA, who apparently also has cats, asked if Kevin was like a magnet. Yup, that's exactly it. You peel her off your lap and toss her (gently) to the floor, and she immediately climbs back up. It's kind of cool when you're just sitting around, but slightly annoying when you're trying to remove, or put on, your shoes. And frankly, it seemed a little psychotic. Clingy, in an obsessive-compulsive sort of way. But then I had a thought: maybe she's not psychotic, but rather empathetic. You read stories about animals that can sense that an earthquake is coming, or sense the presence of cancer or the presence of impending death (well, that's how the humans observing them are interpreting it, anyway). Maybe Kevin's one of those animals. Maybe she can tell I'm dying, so she's climbing into my lap not for her own benefit, but for mine. That would be so sweet and sentimental, and such a cool interpretation of her actions. That is definitely what I want to believe is happening. But then, of course, she inserts her claws into my leg deep enough to draw blood and I think, nope, Kevin's psychotic.
Dear Supposed "Adults," We are now entering the late spring which means we are entering that season where the newspapers are full of articles about stupid people doing stupid things. Historically, this has largely meant stupid teenagers doing stupid things like, say, getting drunk at a party, driving home, wrapping their car around a tree, and dying, or perhaps engaging in the type of prank that requires the involvement of emergency services and insurance settlements with lots of zeroes. So far, however, the news stories I've seen this year have been slightly different. This year, writers seem to be focusing on stupid adults doing stupid things to teenagers. Now I will admit I have a slightly unique perspective on things in that I am dying. Therefore, it is clear to me in ways that it probably isn't to most other people that life is short. Moreover, I am not only dying but I'm dying of cancer,. This means it is also clearer to me than to most that life is not only short, but hard. And I say that as a relatively well-off straight white guy. If I think life is hard, how much harder must it be for someone who doesn't get to check off every single one of the boxes in the advantaged categories list? So here's the thing, adults in authority: if a senior shows up at her high school prom wearing a tux, you let her in! You do not send her home for being "inappropriately" dressed. You do not take away her one shot at prom. You do not single her out. You just don't. First off, have you not heard of Marlene Dietrich? Ms. Dietrich settled the question of whether or not a woman could be sexy and female while wearing a man's suit eighty-five years ago. (Answer: Most definitely.) Moreover, if you want to get all moral on the subject, trying doing a Google image search on "prom dress." It will take you about three seconds to figure out that a dress is not a guarantee of appropriateness. Perhaps my values are skewed, but if I was attempting to create an "appropriate" venue for teenagers, I'd take a dozen girls wearing studded shirts and shawl collars over a dozen wearing the latest in porn star chic any day of the week. But more important, who cares? It's been a lot of years since I was in high school, but I seem to remember -- and I see demonstrated by the current generation on a pretty regular basis -- that if there's anything teenagers are good at, it's policing the walls of acceptable teenage behavior. It's the kids' dance, and if they're bothered by a girl in a tux, I am very confident they will let her know very quickly and in no uncertain terms. So why the fuck are you inserting yourselves into that situation? Life's hard enough for an average teenager, much less one pushing at the socially expected boundaries. What possible advantage could there be, to anyone, in making her life harder? And speaking of making things harder, if you run an elite military college like, say, West Point; and you have a tradition of taking pictures of groups of graduating cadets wearing uniforms from the past as a way to celebrate their accomplishments and connect them with those who came before; and you have a graduating class of roughly a thousand people of which exactly seventeen of those people are African-American women; and sixteen of those African-American women elect to put on the old uniforms and get their picture taken with their fists raised in an expression of strength and unanimity, you celebrate them! You do not investigate them. You do not judge them. You don't do anything but congratulate them on their accomplishment. Granted, I did not go to a military college, nor did I serve in the military. But I am not a moron. You cannot tell me that sixteen African-American women -- i.e., sixteen individuals who basically don't get to check any of the boxes on the advantaged categories list -- you can't tell me those women didn't face more challenges in getting through school than most of their classmates, and didn't deal on a daily basis with more difficulties than most of the rest of us could handle on our very best days. Those women have earned the right to celebrate their accomplishments in a way that acknowledges the unique challenges they faced. And if that makes you uncomfortable, General Whiteguy, that's your problem, not theirs. But I do want to thank all the privileged adults running around trying to make things harder for the young people around them for one thing: the more of this kind of bullshit I read about, the less concerned I am with dying. If this is how the world is going to work, you can have it.
Lately, I've been thinking a lot about high school. Unlike pretty much every aspect of life since, the experience of high school -- at least my experience of high school -- contained an element that now strikes me as extremely relevant to my life, though the bulk of the experience does not.
I refer, of course, to the timed test.
I don't know about you, but my high school involved a lot of timed tests. Freshman social studies, for example, began with an exercise that go the entire class to the point where, given a pencil, an A3 sheet of paper, and two minutes, we could all freehand and label a map of the world. Now granted, it didn't have to be perfect -- India was just a point-down equilateral triangle -- and I went to high school before the wall fell, so the upper right hand corner was just the big blob of the Soviet Union rather than all of the individual 'stans and whatnot, but it was still a timed test. And then, of course, there were all the state mandated "does your school suck?" tests, and eventually the pre-college alphabet soup -- PSAT, SAT, ACT, AP, etc.
So, yeah, a lot of timed tests.
One of the more interesting parts of a timed test was always the question of what to do when you got the two minute warning. Do you a) continue plodding along, b) panic, and start randomly filling out bubbles, or c) take the zen approach and call it all good.
In high school testing, there was an easy way to figure out the right choice. First, you ask the question, does this test matter? If the test is, say, a "does your school suck?", the answer is a definite no. And if the test doesn't matter, the answers don't matter, and stressing about the answers doesn't matter, so you go with the zen option and put your pencil down. But if the tests matters -- and will, say, determine if you get into college or whether you'll qualify for scholarships -- you've got to
ask a follow-up question. Is there a penalty for wrong answers?
If there's no penalty go B and start filling out bubbles. What the hell? Any question you randomly get right is a point in your favor, so you may as well take a shot.
And if there is a penalty? Well now you've got to do some calculations. How much is a right answer worth? How much does a wrong answer harm you? How confident are you in the material and your chances at randomly guessing the right answer? Most of the time, even with a penalty for wrong answers, guessing still has a large enough payoff to make it worthwhile.
Of course, this only applies to the fill in the dots exams, where four or five minutes is plenty of time to complete an answer sheet. Essay tests, well, there you're back to zen. Nothing you can write in a panic in the last four minutes is going to have any impact on your score.
So the question is, what kind of test is life?
Is it a test that matters? Should you run around in your last few months trying to make amends, or find god, or finish your projects, or whatever, or can you just walk away from it knowing that it was what it was, and nothing you can do in the time remaining will have much impact at all?
And if you decide it matters, what part of it matters? Where do you spend your limited number of remaining days?
The evidence would suggest that I got pretty good at figuring out what to do with the last five minutes of a standardized test. I'm not sure I can say the same about figuring what to do with the last six months of a life. I don't miss much about high school, but I miss taking tests where I knew what was expected and how to perform.
I think I’ve written previously about the studies that have shown that terminal patients and their doctors frequently talk past one another. The doctor will say, “This treatment will extend your life” meaning “this treatment will extend your life by three weeks” but the patient will hear “this treatment will extend your life by three years.”
It would seem my oncologist has read those studies as well. I can’t tell you the last time I had a conversation that involved the word “months” more than today’s scan review with the oncologist did. Irrational hope springs eternal, but my doc clearly doesn't want the fault for any unreasonable expectations vis-Ã -vis life expectancy sitting on his shoulders.
In other words, today’s scan review comprised pretty much entirely bad news.
Here’s the rundown:
My tumor markers, which until now had been creeping up but generally running in the vicinity of 11 to 14, jumped to 18 prior to my last infusion and were 47 on Wednesday. Higher is not better.
The largest tumor in my liver was roughly a centimeter bigger across all dimensions, growing from about 3x3x3 to 4x4.5x4. And since the point of comparison is volume, not distance, this is growth on the order of 300%, not 30%. The good news – ok, I lied; there was some good news, at least if we measure on a sliding scale -- is that this particular tumor sits in an area of the liver that can actually absorb a fair amount of growth before the cancer will get in the way of organ’s functioning. I suppose that's something.
The other liver tumors showed similar signs of growth.
More problematically, the “questionable” spots on my abdominal wall were also larger –- and were joined by a new friend -- which means their make up is no longer in question. It’s cancer. The biggest downside of this is that it definitively cuts off anything other than systemic treatment – i.e., chemo – since chopping or radiating the cancer out of my liver wouldn't do me much good. The cancer will just migrate from its vacation home in my abdominal wall.
Interestingly, the doc made clear that he didn't think this turn was specifically caused by my most recent cancer vacation. He could just be trying to be nice -- and given how frustrating a patient I must be, I appreciate the effort -- but he was pretty adamant about emphasizing that, though the vacation made it a little hard to be 100% certain, the signs are that I was growing resistant to the drugs. Doesn't really matter, though. Even had I known for sure this would be the result, I'd still have taken the vacation. It was worth it.
So where do we go from here? I’m so glad you asked. Here are the options I was given:
Option 1: Embrace the inevitable, and do nothing.
Pros: No side effects.
Cons: A very questionable likelihood of seeing my forty-ninth birthday.
Option 2: Start back up on the Xeloda/Avastin/irinotecan treatment I abandoned last month, so as to confirm the oncologist’s suspicion that it was no longer working.
Pros: A definitive answer, and possibly, though not probably, a few extra months.
Cons: All the same side effects I was having before.
Option 3: Go back on the oxiliplatin/5FU treatment that started this adventure two years ago and which I despised, so as to confirm the oncologist’s suspicion that it likely wouldn’t work.
Pros: From my perspective, none.
Cons: Even worse neuropathy, and the damn forty-eight hour infusion pump.
Option 4: Some new pill that just got FDA approval.
Pros: No infusions (which means ink is still possible, cause, yeah, that's important :-) ), and a low risk of side effects.
Cons: It’s impact isn’t really well known but the effectiveness shown in trials wasn't huge (trials showed it adds about two months -- there's that word again -- to a baseline lifespan of four to six). Also, insurance companies haven’t heard of it so it’s a battle to get them to pay for it.
Option 5: Clinical trials.
Pros: “Since we don’t really know what to expect in a phase 1 trial, there’s always the possibility of a miraculous response.”
Cons: Yeah, right. We talked about three or four potential trials, and most of them were, at best, Hail Mary passes – e.g., Drug X doesn’t work, and Drug Y doesn’t work, but maybe if we give them together the combination will have an effect. My oncologist’s eyes didn’t actually roll back into his head when he was talking about them, but it was pretty clear he didn’t see the trials currently available as being of much value to me. (Apparently, my cancer doesn't include any of the genes you want it to have if it's going to be responsive to current treatments. Maybe in "five to ten years." Thanks, Mum & Dad!) Also, there’s always the chance you’ll be in the control group and get placebo, in which case you're hassling with infusions and the rest for no possible personal benefit. And regardless, you’re back on bi-monthly infusions, which, since it's a trial protocol, cannot be flexed, thus making any further travel extraordinarily challenging.
As you can plainly see, there are a lot more cons in this list than pros. We're definitely looking at one of those "least worst" choices. So let's see...
Option 2 and Option 3 are non-starters. I can think of precisely nothing that would send me back to the forty-eight hour infusions (Option 3), and after a week of feeling pretty good, I can't say I'm really excited about feeling lousy again -- especially for something the doc doesn't think will really work (Option 2).
Despite the frequent tone of this blog, I can’t say Option 1 is really speaking to me either. I can’t provide a list, but it feels like there’s more to do before my time on this planet is over. (I wonder if that feeling will ever go away? I suppose probably not. Anyway...) So that leaves 4 and 5, but the list of cons on Option 5 is just too bloody long to make that choice now. Maybe when things are -- or rather, I am -- slightly more desperate.
So Option 4 it is. The doc’s going to start the battle with the insurance company to get the drug and, assuming that’s successful, in a couple of weeks I’ll get trained on it -- what sort of pill do you have to be "trained" to take? -- and then start it up. This one doesn’t come with infusions and is apparently a five days on, four (?) days off, five days on, two weeks off schedule. Which seems pretty manageable, and also means I'll only be going to SCCA for checkups once a month, rather than every three (or two) weeks. I'll miss talking with my PA, but not enough to warrant making a different choice.
In any case, if my clock wasn’t ticking like a time bomb before, it certainly is now. (Suddenly, I have a new understanding for Marisa Tomei in My Cousin Vinny.)
And one final message for those of you reading who are more than just casual blog surfers:
Remember: the first of the five stages of grief is denial. Embrace it! I certainly have. If my head was any deeper in the sand, I’d be back in Australia. This weekend I will join the crowds of people watching pretend superheroes beat each other to a pulp, and I will enjoy every second of the teasers for the films that are to follow in the coming years, and as they play I will tell myself that I will be around to see them, even though it’s probably not true. And if I'm lucky, I can extend the denial long enough that I can die, er, pass away before the anger and bargaining start.Though now that I think about it, I do have some awfully snazzy stuff I'd be willing to trade away.
And for some reason I'm suddenly reminded of this Monty Python sketch...
I'm really growing to despise the pharmaceutical industry. In the cross hairs today: Purdue Pharma, or as I shall call them because I'm a mature individual, PP. PP is the maker of OxyContin, which you may recognize as a painkiller that's frequently at the center of concerns over opioid addiction. It seems some reporters at the LA Times got it in their heads to ask why. Why is OxyContin so addictive? Here's what they learned: The major marketing advantage of OxyContin over other painkillers was that it was supposed to be effective for twelve hours. Turns out, however, that it actually isn't effective for that long. For a great many people the effects of the drug wore off way sooner than twelve hours, leaving them both in horrible pain and with the beginning symptoms of withdrawal. This, then, drives the cravings and drug seeking that lead to addiction. As an aside, as I learned following my surgery, the docs focused on pain relief really want patients to stay on top of their pain. At the first sign that pain was returning, they wanted my hitting the little button that sent drug into my system and, if that didn't work in a short period of time, pressing the call button to have someone come help. They do not want patients cycling through waves of pain, no pain, etc. Anyway, back to OxcContin. When PP learned that their drug didn't generally last as long as they thought it did, rather than telling doctors to prescribe OxyContin so that it would be taken more frequently -- which would a) keep the pain from returning, and b) prevent the withdrawal symptoms, but also c) erase OxyContin's competitive advantage over competing drugs -- PP doubled-down. They instructed doctors to prescribe higher doses on the same twelve hour schedule. This, of course, just made things worse for patients, who were still cycling between relief and pain plus withdrawal, but now they were dropping off a higher high and so driven even more strongly into pattern of addiction. And now here's the best part: knowing that their drug had a effectiveness duration no longer than morphine, whenever that evidence was brought out in lawsuits or court proceedings, PP would have the records sealed under the argument that this was necessary to protect their "trade secrets." In other words, they knew what they were doing, they knew it was causing harm, and they just did everything they could to hide that fact, both from the parties that were harmed and the doctors out there prescribing the drug to new patients. I really shouldn't be surprised by this kind of shit anymore, and yet here I am.
It seems doctors at Johns Hopkins University released a study this week with, as someone who spends a significant amount of time in medical facilities, what I found to be a slightly terrifying conclusion: medical errors are now the third leading cause of death in the United States. It seems some 700 people a day die, not from whatever it is that sent them to the doctor in the first place, but rather as a result of some avoidable mistake that happened while they were being cared for. Unfortunately, the brief article I saw did not mention what the number one and number two causes are since, statistically, you'd want to risk going to the doctor if you're dealing with one or two, but otherwise skip it. I mean, if you've got an ingrown toenail or something that's way down on the list of the causes of death, why would you want to risk going to the doctor which, according to this study at least, could take you from, say, number seventy-two to number three? Which kind of makes you wonder why anybody goes to the doctor at all. Maybe my Dad had it right all those years ago. There wasn't much that would send him to the doctor and now that I think about it, if I'm recalling correctly, it wasn't the leukemia that killed him, but rather complications from the surgery to place the port needed for the treatment that he never got. Which makes me think that I may have mischaracterized this story. Maybe this is actually today's happy news: instead of dying from cancer, there's a reasonably good chance I could die from a medical error. It's a very strange world we live in.
So I read today that the Ringling Brothers circus has gotten fed up with the animal protesters and so accelerated their plan to retire all their elephants to an elephant retirement home in Florida. The last shows involving elephants happened this week and now the critters are on their way to live out their days in America's battlegroundiest of battleground states. Having visited once, I wouldn't want to live in Florida, but it seems the kind of place -- i.e., hot and humid -- an elephant might like. I hope that's the case. No doubt this is good news for one team of elephant lovers, and bad news for another, but it's interesting news for cancer patients. As I noted here previously. there's scientific interest in elephant biology vis-a-vis cancer since elephants don't really get cancer, despite their size and longevity. So, in addition to doing whatever it is retired elephants living in Florida do, the Ringling Brothers elephants will also be providing researchers with the occasional blood sample. Which is pretty cool. I would totally sign up for a cancer treatment derived from elephant blood. 'Course given the way we humans work, we'll figure out how to turn elephant blood into a cure for cancer right about the time we finally drive the species to extinction.* And now my happy news doesn't seem so happy. Sorry 'bout that... * If I recall correctly, there's a Sean Connery movie that follows this basic plot line, though without the elephants.
Today was scan day. In other words, the morning comprised about five minutes of interesting stuff surrounded by hours of sitting around reading articles in Time wondering if Ted Cruz would be able to stop Donald Trump (spoiler alert: no, he won't) or in which one famous person extols the virtues of their friend, some other famous person, who Time has somehow deemed to be "one of the 100 most important people in the world." Sadly, the magazine did not also include an article explaining how and when "important" became a synonym for "famous." Anyway, back to the scanning... I never quite got the whole story, but the sitting problem was exacerbated by the fact that the SCCA has a new CT scanner. Very snazzy, but somewhere in there either the new scanner temporarily broke down, or the old one did permanently, but somehow they had to get two schedule's worth of people scanned with only a single scanner available. Thus, the "go sit and drink this contrast agent over the next hour" turned into "go kill an hour and a half and then spend an hour drinking the contrast agent." Big fun. I have to say, though, the new scanner was awfully snazzy, once I got to ride in it. It even comes with a computer monitor over the hole that tells you your name, medical record number, gender and age. Not that I don't know all that information, but it's to be able to confirm that they know who they're scanning. Having been victim of identity mix-ups in medical settings on more than one occasion, I'll take all the confirmations I can get. I should note, however, that I was apparently not the first person to mention that putting your age up on the big TV monitor seemed a little unnecessary. I suppose it could be worse; could be your weight. Aside from the monitor, the new scanner also had this weird etching inside the hole. I'd say it was there to entertain you as you move through the machine, but I can't imagine. It's actually fairly hard to see so you've got to focus pretty hard on it, which means you're not focusing on the instructions to breathe, hold your breath, etc., that the machine's giving you while the scan runs. But whatever. Oh, and a word to the wise: if you have to get a scan, try to avoid sneezing when you're coming out of the scanner. Freaks. Them. Out. From the reaction of the tech in the room, and then the nurses in the observation area, you would've thought I'd been shot. They were convinced I was having some sort of reaction to the contrast agent, and terrible things were going to soon starting happening. Nope. Just a sneeze (well, ultimately four sneezes). It's sort of funny what gets a reaction and what doesn't. I get the feeling that you could be gushing blood and they'd be like, ah, whatever, it's just a flesh wound, but sneeze and they all but bring in a crash cart. Odd. And now we wait for two days to see what stepping off the chemo path has done to me. It could just be the new found energy, but I'm personally hoping for the miracle cure.* * As I've mentioned previously, irrational hope is hard to kill.
Well here's a bit of cheery (warning: sarcasm) news: apparently, oral cancer drugs prescribed today cost six times what similar (or even the exact same) drugs cost fifteen years ago. In other words, a treatment that would've cost, on average, $1,869 in 2000 cost $11,325 in 2014. Inflation, you say. Well, obviously, but a quick bit of math shows the annual inflation rate necessary to get from $1,869 to $11,325 in fifteen years is just over 13.7%. As they say in the funny papers, nice work if you can get it. A quick bit of Googling tells me the average US inflation rate over that same period was just 2.2%. Wage changes are harder to calculate given the numbers vary significantly depending on your income bracket -- big surprise: the higher the bracket, the better the annual rate of increase -- but for most people it's probably unlikely that their wages increased by 14% a year. So covering a 13.8% annual increase in your cancer drugs is a relatively big ask. But don't order yet. There's more. As the article points out, not only has the retail price of these drugs skyrocketed, but insurance plans -- not mine, thank god, at least not yet -- are increasingly asking for patients to bear more of the cost for such treatments. Particularly challenging are those plans that require the patient to bear a percentage of the drug's cost, rather than paying a flat co-pay. But there's still one more factor to consider: despite all the PR, how many cures for cancer have you seen emerge in the past fifteen years? Compare that to the number of new oral treatments, allowing you to "treat your cancer the way we treat diabetes," that have emerged. So now, to the extent cancer's like a (very expensive) form of diabetes, cancer patients basically get to pay some twelve grand a month to stay alive. (Retail price on Type I diabetes care is probably somewhere in the realm of $500-$1,000 a month.) So it's a win-win for everybody -- well, except for the patients without awesome health insurance and/or without ten grand a month to spare. And really, who has that kind of money just sitting around? Well, aside from drug company executives. Ultimately, I think one has to wonder how wise a strategy the drug companies' approach is. With a 13.8% inflation rate, it won't take long before the number of Western patients who can afford these medications diminishes beyond the point where the population can support the industry. And then, of course, there's the bodies. People tend to react negatively to bodies, especially when it wasn't really necessary for them to become bodies save for the cost demanded to keep them humming along as people. At some point, you'd think the pitchforks would have to come out.
