Brain Damage for Beginners

Assuming I don’t drop dead in the next week or so, on February 1, I will be at 24 months No Evidence of Disease (NED)(also assuming that the MRI I got in early January is still applicable). This is HUGE. I should point out that NED is only on scans, and kind of highlights the unfortunate divide between what’s on paper, and the reality on the ground (possibly literally, in my case; because, yeah, the scans are clean and stable (hooray!), but I’m still exhausted, and will crumble and fold like a cheap lawn chair if you ask me to sprint.

It still beats the alternatives, though.

I did meet the only other Phase 1 Marizomib patient on the planet, though (I’m exaggerating, but only slightly). Jimbo (obviously not his real name, nor does that reflect what I think of him, but I’m running out of pseudonyms I can easily remember) is in the Phase 1 trial for using MRZ on recurrent GBM. Obviously, I’m interested in keeping tabs on him for personal reasons, because the tumor coming back is every survivor’s biggest nightmare, and I’d like to either have some sort reassurance that this thing is either completely in the rear-view mirror, or I have a back-pocket treatment option (when I was being treated with MRZ, it was for first-time diagnosed glioblastoma, not recurrent; it’s since gone on not only for rGBM testing, but is being tested on certain types of drug-resistant leukemia). Obviously, I gave Jimbo all the advice I felt would be helpful (LOTS of CBD, don’t be afraid of antidepressants or antianxiety drugs, lots of exercise, liquids, and fiber, etc.), but he did highlight an issue I’ve had discussing cancer and health with a lot of other survivors and healthy people.

We have a very unhealthy, binary, static view of health that mirrors our view of success. In America, we tend to view success purely in terms of money and/or family. You either have a dozen yachts, four beautiful children, and a fulfilled spouse, or you’re homeless and single. God forbid you try to mix and match from those two extremes and/or fall between them.

Life with cancer forces you into that big grey area between “professional triathlete” and “hospice care.” Most newly-diagnosed patients (understandably) flounder in that area, and Jimbo most certainly qualifies. Our society, health, and education system are designed around understanding infectious diseases. Which is understandable, we’ve had all of human history to understand them, and they’re pretty easily understandable and remedied, even with Medieval medicine (this where we get the concept of quarantines and isolation from). Whereas we’ve only had 2500 years to learn about cancer (Hippocrates was the one who named it). I suspect that this nasty “Healthy or dying” binary dynamic is a holdover from that thinking - you can “cure” infectious diseases in a variety of ways, but the point is, you can get to a point where all the foreign pathogens are out of the system. Bingo, you’re cured.

At the risk of man-splaining (cancer-splaining? Can-splaining?), just a quick review/summary of how cancer works: Every cell in your body is programmed, on a genetic level to divide, grow, make proteins, divide a few more times, and then age and die. You actually want some cells to age and die, that’s why you don’t have webbed fingers or a brain that’s larger than your skull (there are some gruesome experiments wherein researchers permanently activated proto-oncogenes in mice)(think of your body as a symphony, and every cell as a single musician with an instrument - you don’t want everyone playing as loudly and as fast as they can all the time). The genes that promote cell growth and division are called proto-oncogenes. The genes that stop that and promote cell death (apoptosis) are called tumor suppressor genes. To paraphrase an immunology professor from graduate school, when you have a proto-oncogene permanently activated and the corresponding tumor-suppressing gene is turned off, you have cancer. That single cell then induces similar mutations in neighboring cells and even distant cells (the process is poorly understood). Unless medicine has gotten a helluva lot more effective since I last checked in (possible, but unlikely), it’s extraordinarily unlikely that medicine has some technique to nail every single cancer cell in one go (even with tools like immunotherapy, cancer mutates and divides like traditional pathogens, and, eventually, becomes resistant or evades almost every form of treatment). If you want some secret conspiracy hidden by Big Pharma and “they,” it’s that medicine is far more incompetent and clueless than it presents itself as, and the PR for “curable” cancers is just just as hollow as our tumors.

I may have mentioned it previously on this blog (which reminds me, shameless self-promotion; I now write more frequently at https://medium.com/@patrickkmc10), but you don’t see diabetics or heart disease patients moaning about their incurable conditions, even though they are incurable. But there’s an awful lot of survivors whinging about incurable diseases on Planet Cancer. Let me be the first to point out, there is no such thing as a curable cancer. Unless you have some convenient back-up body you can jump to or CRISPR technology grows by leaps and bounds in your projected life expectancy, it’s here to stay; it is in the most heavily-protected part of your cells, and it’s likely to be in more than one cell in your body.

I was lucky enough to have oncologists who, while not exactly the warmest and fuzziest of folks, always viewed - and encouraged me to view - this as an incurable-but-manageable condition, like heart disease or diabetes. Which was a surprisingly helpful way to look at this disease; complacency kills survivors fast (denial comes in many more flavors than, “There is no problem,” but the best way to look at it is that denial is any attitude that discourages you from just tackling the problem at hand as if your life depended upon it). I get contacted a lot by caregivers and survivors asking me how I “beat” it; I always feel like I have to correct them and point that I beat it this time around; it’s likely to return, and I have no idea how I’ll deal with the disease at that point. I’m hoping a few more senators and rich and famous people will die from it, and science will miraculously make a break through before then.

In the meantime, my treatment strategy was both surprisingly simple, and surprisingly hard:

1. Get the most aggressive, effective treatment possible, and keep on that regimen for as long as possible - Jimbo is starting his treatment course with the same information (and similar educational background) that I came at it from; namely, the world of statistics and medical studies. Which is fine, but, as I learned, these statistics are like the stats surrounding the Vietnam War - they don’t portray an accurate picture. When you start going to support groups and asking questions, or start hearing from people affected by this disease, there a lot of “Oh.” moments. My first big one started on Day 1, when Head Warlock in Charge casually mentioned that they don’t always recommend the full six weeks of chemoradiation for everyone, and I started hearing how relatively few of us make it through treatment without dangerous side effects (including Jimbo, I’ve heard of/had direct or indirect contact with - let me count - maybe half a dozen other GBM survivors; I am the sole one who made it through chemoradiation without any seriously dangerous side effects)(aside from the TIA and residual neuropathy, I mean). Compound the fact that treatment, in and of itself is dangerous with the stat that something like only 25% of us qualify for further treatment, and you can start to see why this is such a dangerous disease, which brings me to...

Month 23, Day 3 I got an MRI last week, showing no regrowth or metastasis, which is the goal. Even though I’ve moved mostly to Medium, because it offers better tracking and, y’know, the whole payment thing (check me out at https://medium.com/@patrickkmc10), I thought I should do this one as a freebie, because this whole “Cancer Survival” black box recorder project wasn’t really ever by or for me.

It’s about you guys.

And that’s why I felt like I should come back to this site, because it’s where I started this whole thing, and, y’know, the free access thing. Assuming I don’t die in the next four weeks (always a distinct possibility when you’re living with The Deadliest Disease Known to Medicine)(TM), I will become a long-term survivor. With no recurrences or metastases, which is almost unheard-of (the average life expectancy of a newly-diagnosed GBM survivor is 24 months, max). I started writing two long years ago because expressive dysphagia is a common end-stage symptom, and I was utterly certain that everything I wrote, created, or said would be my very last.

Thankfully, that level of fear is unsustainable, simply from a physiological standpoint. And, as I went through treatment, I started hearing some stories behind the numbers, that started explaining the horrifying numbers. Things you need to know when your doctor asks if you’re comfortable, if you need a glass of water.

First of all, there’s the very basic fact that almost all cancer survival statistics are badly out of date. You’re working with data that’s usually 5 years old, at least. In the medical world, that’s nearly-obsolete. Also, the average age of the average GBM patient is 68. The global life expectancy is something like 74-ish; not very many 68-year-olds are going to make it ten years; fewer are going to last when they get a cancer diagnosis.

And, as one of my oncologists noted, based on various genotypes, patient tolerances, and other indicators, glioblastoma isn’t some monolithic, single disease, but several dozen distinct-but-closely-related sub-types, and treating it as a single disease with a single treatment does survivors a dramatic disservice..

So, a few things that, even though every survival experience is unique, I feel safe in recommending for all brain cancer patients (”There are dozens of us! DOZENS!”)

1. Start strong - I realized, half-way through treatment (I’m pretty sure I wrote about the slow realization that HWIC’s exhortation that my survival chances were excellent weren’t false optimism, they were a weird Faustian pact) that not everyone gets signed up immediately on the most-aggressive treatment available. You want to start on the harshest course of treatment from Day 1, this disease is not merciful, and you shouldn’t expect or demand any mercy in turn (from anyone).

2. Stay the course - There are, obviously, qualifications and exclusions and disclaimers in that one; if you have a dangerous allergic reaction or sudden platelet drop, maybe reconsider chemo or change it. With that said, if we’re just talking about pain or discomfort or any of the other numerous side-effects; suck it up, buttercup. Cancer is like a bacterial infection - if you stop a treatment course halfway through and it comes back, it’ll be resistant to previous treatments. For a disease like GBM where there are only a half-dozen proven treatments, you don’t want to burn through them.

3. Your homeland is now cancer - One thing I got really lucky in is that I was able to put everything in my life on hold and make  cancer survival my full-time occupation. Looking over other survivor stories; I think that’s what’s required. I was in the gym an hour a day and had daily appointments with a variety of specialists at the height of treatment. I think that’s probably what it takes; you have to make every single aspect of your existence about survival. Now, that’s horrible, and unsustainable, in the long-term. But you have to survive the short-term, first, and that does require massive lifestyle and dietary changes. For starters, filling prescriptions and keeping track of appointments took up six hours a week by itself at the height of treatment.

4. Document everything - My life changed in a very weird way when I got on Instagram (the preferred social media for survivors) to take pictures of me in the infusion center. This was my almost non-existent attempt to demystify a disease and process that has a very weird, undeserved mystique around it. You’re literally just sitting around, with a tube in your arm, being poisoned, hoping you outlast the poison and the disease. Then your hair comes out in clumps (thankfully, I had the Stetson well before that, so it was just a case of sighing and rummaging through my closet at that point). So, it was a weird - and inspiring thing - to hear back from survivors, caregivers, and others who’d been touched by this disease. Unfortunately, there are only a handful of that original crowd still above ground, but I feel blessed that they offered what fellowship they could. Cancer is so far beyond the able-bodied experience that it’s existentially isolating. It was an enormous morale-booster to realize that I had to make it, for everyone who didn’t.

5. Look into experimental treatments right away -  Even if you’re on a treatment regimen that seems to be working, you want to have a worst-case scenario nuclear option available. It was, possibly, one of the better days of my life when Tocagen announced testing for a recurrent GBM immunotherapy. Even if you don’t need it; it’s enormously reassuring to have an insurance treatment available. One thing HWIC repeated whenever I asked “What if this doesn’t work,” was, “Then we’ll look at other treatment options.” It wasn’t until after treatment that I realized that most people aren’t willing to just go through treatment after treatment until they find something that works; that undoubtedly skews the statistics.

6. It’s going to get worse before it gets better - This is true of all survivors I’ve met, but it’s especially true of brain cancer survivors, since the side effects of treatment - seizures, nausea, balance/gait issues, fatigue, memory problems - also mimic cancer symptoms. Even if, like me, you were completely asymptomatic prior to diagnosis, you’re likely to develop them as treatment progresses. All cancer patients need to recognize that - treatment or no treatment - life is gonna suck for a year (or a few years) after that diagnosis; the question is whether you heal and get better after that period or if that downward trajectory ends with a funeral. If treatment isn’t working, find something else, immediately.

Month 14, Day 21

I went in to see Radiation Oncologist. She not only cleared me for “a few months,” she’s set me to six months. Hooray.

Which means I’m no longer in “active treatment,” Which also means, for those of you who only follow me here, I’m going to https://medium.com/@patrickkmc10

I may or may not update this blog, but it’ll look more like my updates prior to 2017 - infrequent and occasionally garbled. I now have to figure out what to do, post-cancer, even though GBM is, in the most technical sense, forever. I have another neurocognitive exam tomorrow, then it’s into the great wide open. Maybe We’ll see.

So, I began this weird, freakish, writing project 82 years ago in undergrad as an e-mail to all my old high school friends and family (yeah, if you signed, “keep in touch” in my yearbook, I did keep in touch), occasionally during my time as an EMT, and intermittently in grad school. Then I got into medical school, and I somehow lost the time and/or will to write, and only intermittently did this blog during the recovery from tumor #2. That was a mistake.

If there is one take-away moment I’ve had in the past year, it’s that I should - even if it’s only as a hobby - be writing. Every day. You should, too; if you’re not living a life where you come home with a new story or joke you want to share, you’re not maximizing your potential. Based on the people who tracked me down - from roommates I haven’t thought of in a decade, to people I’ve known for over 20 years, to the radiation tech who called me after-hours to thank me for writing them a thank-you note, it’s that my best opportunity to leave something like a legacy behind is to leave a paper trail of notes. I’ve been informally studying intelligence for most of my life, and the two things that seem absolutely unique to our species are opposable thumbs, and the written word. Other species do rudimentary math,  chimpanzees have entered the Stone Age (according to anthropologists), ours is the only one that seems to have the idea of leaving a written record of events.

When I was very young, I wanted to be a writer. Then life happened, in the form of my first brain tumor at age 17, and I wanted to be a doctor, because that was the only way I could see forward to helping others in my position. I think I got blinded by that for far too long, and then, six years ago, I really wound up in deep shit thanks to Tumor #2, an astrocytoma (which inevitably develops into glioblastoma). I probably passed up far too many opportunities over the last six years under the belief that my time had already come. I think I gave up.

Then, on Nov. 10, 2017; I got the news I’d been dreading for over a decade: I had a terminal diagnosis. And, throughout this whole, horrific process, there was one thing that kept me going: finding out there were a few people - not enough, but a few - who had made it through the deepest, darkest trenches of the abyss and made it out the other side. I’m not there yet - I’m still in the recovery phase, and I still have a disease the World Health Organization has described using phrases like “abysmal” and “inevitable.” But, in the last year - I know, because I’ve literally spent some days just hitting the “refresh” button on the FDA’s clinical trials website - science has made huge strides in developing immunology-based treatments that should last.

The lasting lesson of the past year is that I should’ve spent a lot more of those six years networking and making contacts, because I’m apparently really good at that, and that’s a far better route to success than gnawing away at something I’m not great at. So, if some of you get a phone call in the near future from me asking for a favor, I do hope you’ll help me out.

The final lesson - apart from the importance of self-care (which is like shoveling snow - it’s not taking a relaxing bath, it’s doing the important-but-boring stuff like eating properly, getting to the gym every day, and showing up for your blood-draws).

14 months, two weeks, one day post-dx

This week, in addition to The Donald, the big news has been... Gillette shaving products. You might know this company for the various shaving-based products they make, or the catchy slogan, “The best a man can get.” Which sounds a little weird and unintentionally homoerotic, but I dislike bleeding when shaving, and, for travel purposes, they have the market for disposable razors.

In the wake of Brett Kavanaugh being confirmed and Cadet Bonespurs still not being called for using the word “pussy” on a live mic (okay, so, even if we want to accept the idea that men talk to each other in the locker room - we don’t, it is the most uncomfortable and awkward environment imaginable - you don’t repeat it in polite company, and YOU DO NOT REPEAT IT IN A TAPED INTERVIEW), it has come to light that America has a problem with massive, throbbing male egos that go unchecked until they inevitably screw up and alienate so many of their victims that Americans vote in loads of sensible, moderate people (previously known as “women,” but that was also when we voted based on gender and class lines instead of a person’s public record). Gillette then changed its slogan to “The best a man can be,” which, I have to admit, is almost as good as “The Most Interesting Man in the World” for aspirational marketing aimed at men. The goal of all this was, presumably, to start a discussion on toxic masculinity and gender roles. Now, I may have some misgivings about this conversation being helmed and instigated by a company with a definite financial and cultural stake in the (patriarchal) status quo, but it’s still a talk we need to have in society. My reaction of vague misgivings and semi-apathy was nothing, however, compared to white men on the Internet. They used all caps to rain impotent fury down upon this perceived slight, that, maybe, we should have a discussion about how framing masculinity only as it brutalizes and disenfranchises others isn’t such a good idea. As someone who’s had his country club privileges revoked but still gets passing privilege, I’d think it’s a discussion worth having, especially if you’re under the rather idiotic impression that your good health and luck will last forever. Now, even though I still stand by the idea that Rousseau was right, and that most of us are mostly-good; at the same time, when you’re forced into a position of vulnerability, people you thought you knew well can reveal themselves to be utter assholes. Yes, pain, torture, and crippling may reveal my inner nature to some extent, but how you treat me in this period is a much more revealing test of your character, dear reader. So, I’m fully prepared to discuss this whole “how you treat the least among you” idea, with the acknowledgment that, as the least among you (sort of), I am fully in favor of toppling the patriarchy and rebuilding it with something less creepy and predatory.

Then I got Rogaine. Full disclosure, Mother Dearest actually got it for me, because I still wear my hair in a rather severe mohawk to cover up the weird, radioactive/thin patches that were scalded off by the nuclear fire (undergoing cancer treatments is like puberty - you change pretty dramatically, physically, and you’re left looking almost, but not quite, like you used to, which is disconcerting to see in a mirror). Normally, the word “regrowth” is not a good one for a brain cancer patient, but, since everything else in my life has been completely upended and vivisected, I figured, “Why not?” In a weird way, even though I’m not in a position I’d wish upon someone I despised (well..), I don’t feel terribly emasculated. After all, how many rounds of chemo and radiation have you gone through? I know I can take a severe beating and get up afterward; even if that beating comes in the form of neurosurgery, radiation, and chemo (I realize my framing of that in terms of violence is probably typical of the problem, but we’re working our way toward other, more humorous topics).

If ever there was a physical embodiment of the sort of mindset that would fee attacked by Gillette’s rather flaccid suggestion we sort of talk about problems with traditional masculinity; it’s Rogaine. First of all, it comes with all these warning labels on it - I am not making this up - saying things like “Not intended for women” or “Not for use by women” (that last one is verbatim). It doesn’t actually go full-blown Alex Jones manthrocyte (or whatever male virility cure he’s hocking this week), nor do the words “male jelly” or “He-Man Woman Haters Club” appear on the box, but it’s amazingly close. What’s especially delightful - to me, anyway - is that a female friend of the family (who has issues with hair stress-related hair loss) is the one who recommended it. However, I am trying to be somewhat more sensible about what I put in myself these days, so I did some quick Internet research (that’s enough to make me an expert on the subject, I figure), and it’s a vasodilator - it’ll open your blood vessels (I still haven’t pieced together how that leads to increased hair growth, but I’m willing to take some things on faith). Apparently, you’re not supposed to take it orally. Which opened up a whole new set of questions, like, 1. What was the study where they found out someone was dumb enough to drink hair tonic? and, 2. If you do drink it, is that some sort of suicide warning? Bearing in mind that this is just the packaging - which, again, I get it’s targeting insecure middle-aged men and/or those of use who want our youthful appearance back while we’re still actually youthful; both of which are vulnerable to suggestion and hesitancy, and maybe they’d turn back at the thought that maybe someone would think less of them for using feminine hygiene products (supposedly, army medics have used tampons to seal wounds in combat, so even the most-feminine of feminine hygiene products is helpful to all genders under the right circumstance), let’s go on to what’s inside the box. Which is a series of bland-looking bottles that are perfect for not indicating someone is insecure about baldness. And an applicator. Let’s hold for a moment. In most medical products - even the CBD/THC oils I take (orally, but maybe I should try them on my hair) the “applicator” is either a glorified eye-dropper or more-glorified Q-tip (side-note: you don’t see Q-tips exclusively marketed to women, even though their most  common use is as a mascara applicator)(this is true; you’ve probably been sticking them in the wrong orifice for years). Not so with Rogaine. This comes with - depending on how you look at it - either a miniature turkey baster (perfect for basting Cornish hens), or a Cyclopean eye-dropper. In other words, there’s virtually no way you could screw up where you stick this thing and apply it nasally (again, I’m sure it’s been tried, and they rewrote the warnings and repackaged it). It is, in short, not only catered to male insecurity, it’s designed to completely idiot-proof (I guess they got that one right, most intelligent people wouldn’t be fooled into thinking that fancy, medically-worded hair tonic works)(normally, neither would I, but the woman who recommended it is smarter than me, so I’m willing to try it). It’s the perfect product for Homer J. Simpson.

After drizzling this stuff onto your radioactive-seared flesh, you’ll notice a slight tingling sensation. Either that or just the sensation of something liquid-y runnning over your scalp, I have a lot of scars, so it’s hard to tell. Then... nothing. Admittedly, I’ve only been using it for a few days, Apparently, you have to use it for a month or two before seeing results, at which point you’re either supposed to discontinue use, or, for the truly brave, drink it. Again, I just went 12 months straight with chemo, it’s not like something as minor as not seeing results will be a major deterrent.

14 months, two weeks post-dx

It’s come to my attention that there are people following me on social media hoping I’ll figure out how to survive a deadly disease. Gods bless ‘em; that’s now obviously my core function (well, in addition to figuring out how to get a career and/or life that can survive a brain that not infrequently shudders to a halt and explodes)(which reminds me, I got the car fixed, which is a sort of victory unto itself). So, here’s the deal; full disclosure.

A helluva lot of luck is involved. At every step. First of all, I had my first tumor (probably unrelated, but it’s still extremely suspicious) at age 17, which was successfully and completely surgically removed. However, the longest I’ve gone between MRIs is 12 months, so I was tagged and tracked at such an early point that they detected Tumor #2 (astrocytoma grade II) and removed it as soon as possible (ASAP in this case being a 10-month delay while Obamacare protections and funding came into effect so that I could get insurance)(yes, people do die of treatable diseases in America). And, since astrocytoma tends to come back angry (as it already did), I was closely monitored for the two inter-tumor years between Tumor #2 and #3 (I once calculated I’ve had almost 40 MRIs in my life)(there might be a correlation between that).

Secondly, I was able to get into a clinical trial - and stay in one. I’ve written about that previously, but a major takeaway is that you can always refuse treatment or leave a clinical trial, but if you formally leave or are removed, you never, ever get to come back. Also, due to the specificity of cancer treatments, there are loads and loads of qualifying or disqualifying factors for who is and isn’t eligible for a trial - Again, these are usually for patient safety (if you think otherwise, I’d challenge you to inject a known toxic substance into your system and see what happens). I do know, from working at a biotech company, that, even though the costs of running these trials doesn’t justify the $300K that Pfizer plans on charging for treatments, they aren’t cheap, and, if I were a cynical man, I’d try to jam-pack my experimental drug trial with as many people as possible who looked like they’d survive on standard-of-care (SOC is legally required in addition to all experimental treatments). To that end, I’m also lucky  - again, in a very weird, funky way.

There are three different forms of the IDH gene in gliomas; I don’t have the best one, nor do I have the worst one. However, “second best” is miles better than the worst one. I also have a methylated MGMT gene, which is important - the unmethylated version is resistant to radiation treatment, which is bad. I also have an ATRX mutation, which is relatively rare, but confers a high five-year survival rate (in this case “high” is 30-50%, which is considered failing in most places).

And I’m young (less than 40) and relatively healthy, which is another good predictor - whether it’s because that means I’m more likely to survive the nastiest napalm baths available and ask for more (and that makes oncologists considerably less ginger about starting you off with the nastiest stuff imaginable), or whether there’s some intrinsic anti-cancer aspect of youth, I honestly don’t know. Same goes with tolerating treatment well - I don’t know if that’s a correlation/causation issue, but again, anything that makes your oncologists feel safer about ordering more/harsher treatment is probably going to add to your life expectancy (if the chemo and radiation doesn’t kill you first). I honestly don’t know if I’d’ve been written off if I was morbidly obese and had heart problems.

So far in my grand design to survive the unsurvivable and pass that on, I realize I’m not coming up with superb results that can be easily replicated. Youth and mutations are random chance, getting into a trial is a matter of being in the right place at the right time (as so much else in life)(although you can do research through clinicaltrials.gov to see if there’s anything you might qualify for).

The advice I can give is this; and it’s worked for me, so far (feel free to change, ignore, or discard it as applicable to your situation):

1. Early detection is key. Familiarize yourself with the most common risk factors and symptoms of brain tumors, and floor it to a neurologist when you have them.

2. Get the very best quality of care, and be prepared to travel. This one is huge. For some reason, lots of people are eager to have their hometown hero perform on them, and the results are usually horrific. When you have brain cancer, the difference between “the very best” and “well qualified” is measured in corpses.

3. Don’t take “No” for an answer. I realise we all need to get better at consent issues, but the word “inoperable” needs to be removed from the medical lexicon immediately. Someone recently accused me of giving false hope when I linked to Anderson MD’s list of GBM myths that “inoperable” is usually code for a facility that doesn’t have the expertise, competence, or technical facilities needed to successfully operate on it. In other words, someone out there will have the ability to do something for you, likely surgically if you move fast enough. Yeah, that might be false hope, but you know what false hope beats the shit out of? Completely hopeless. Real grown-ups are surprisingly fragile and tend to go to pieces at the smallest things. In the past year, I’ve seen my parents throw temper tantrums over arguments they’ve had with my siblings, or an ant infestation. If that’s your mindset, then, yeah, you’re going to be paralyzed and lose that window of opportunity to beat this thing. As I wrote previously, you’re going to go into complete, paralytic shock the first 48-96 hours after you get a diagnosis. Enjoy it, because you don’t ever get to panic, ever again. Same thing with “inoperable,” if you want to accept that and  die, that’s your decision. Survival - of any sort - is not for the faint of heart, and you will  have to drag yourself across that finish line (or have your friends help you). Again, passing on some wisdom from Original Research Coordinator, the first 6-10 weeks post-diagnosis are the deciding factor for glioblastoma. If someone refuses to treat you, ask for a referral.

4. Stick through the entire treatment regimen. I’ve written previously that there are a lot of things you can do to make yourself more comfortable and healthy during chemo and radiation (that would be where the “complementary medicine” comes in). Again, you can quit treatment at any point, but you can’t always continue it  And, as I know, once post-surgical options get removed, they never come back.

5. Complementary, not alternative medicine. There is no cure “they” don’t want you to know about, there is no secret cancer survivor meeting where we all toast each other on finding the fountain of health - you’re thinking of Skull and Bones. Having said that, I get it - cancer treatments of any sort are a shit sandwich and you’re going to have to just get over it and take a big bite. It’s seductive to think there’s a less painful, disruptive, and dangerous path. Don’t believe it for a minute - you’ve gotten a raw deal, and you have to get over it. Having said that, exercise, diet, and lots of CDB (and THC)(don’t smoke it, though) probably made the difference for me completing the full 12 cycles of chemo. I never for a minute thought they would cure of me of anything, but they might allow you to survive the cure.

14 months, two weeks post-diagnosis

This is mostly just an update before the next crisis diverts all of my time and attention. Because I have no grand, unifying idea for this essay, I may go on for quite some time about nothing at all. That should make for a big change.

So, for everyone who wants to replicate my “success,” I guess that most glioma patients aren’t given two simultaneous chemo drugs the first time out, and fewer elect to go the full 12 cycles of both. Cancer is like an infectious disease in that it evolves to counter whatever is thrown at it, so standard of care for GBM is to use one chemo agent until it’s no longer effective, then move on to another, then another. The only problem is, even if Marizomib proves massively effective (again, my only hope in all this - a fool’s hope - is that all treatments have been far more effective and I’ve tolerated it all much better than anyone predicted), that’ll bring the total number of effective, chemo agents for malignant brain tumors up to... three. I’m glad that the Warlocks have decided to gamble two of those on the “puncher’s chance” that it’ll either knock the disease out long enough for science to catch up, or kill it entirely. As for me, I’m not terribly happy that the words “further chemo to be recommended on as-needed basis” were used in the last consultation, but, as I tell everyone out there, “We’ve decided to increase treatment” is a far better prognosis than, “We’ve done everything we can.”

BTW, as ever, this is a chance to drive home the point that you need the very, very best physicians on your case when you have a dangerous disease. I’ve passed the 14 month mark, so I’m now in the top 50% of glioma patients. I also got a call the other day from New Research Coordinator reminding me that they want a urine sample for the clinical trial. That’s something I’d normally associate with parolees (which, in a sense, I am), but I did sign up to provide samples “for years,” to quote the research nurse who walked me through the trial protocols. As I stated at the time, I would’ve happily signed over my first-born because she used the word “years” in conjunction with my future; I should double-check that I don’t owe them a bone marrow sample or another biopsy (brain tumor biopsies are usually referred to as “brain surgery”). In the meantime, everyone on the medical team is using the phrase, “in a few months” rather liberally, so I do feel like I have a little breathing-room between myself and the disease. I’m aware that a 401K policy isn’t a good investment, and I’ll be lucky to see 50 (cancer survivors see a rather dramatic drop in life expectancy), but I am trying to make some headway on my reading list and keeping up with the healthy diet (one of the reasons why cancer survivors don’t last long is that, with the long-term health effects of treatment, relatively regular early mid-life health issues, like heart disease, are seriously and immediately lethal). I’ll be updating as things happen to me (or look me up on Instagram), but the next “big thing” is a consult with Radiation Oncologist in a week - I don’t expect her to find anything particularly interesting, but I’m ready to trade sexual favors for another set of qualified eyes on my MRI at this point - followed by the final neurocognitive battery, which you know I will write about. All of that will be followed by a colonoscopy, at some point (”In a few months”), because I don’t want to survive a rare. fatal cancer to be felled by something as boring and treatable as colorectal cancer.

“In the end, our society will be defined not only by what we create, but by what we refuse to destroy.” - John C. Sawhill

When you’re young, everything moves quickly, far too quickly, really. Remember before you were ten? Before you were five? I’d bet those memories are filled with noise and light. Then you move - imperceptibly in an ideal situation, in a few stuttering leaps in mine, when you no longer have to worry about being the center of the world you inhabit; you have to become comfortable imagining the world without you in it. It’s beyond frightening, until you realize that much of the planet will remain unchanged. We are guests at the art museum, not residents. As disturbing as that is, it’s also a little comforting; we can’t take it with us, but we can’t burn it, either.

I was originally going to write about my favorite topic - brain damage - but, as Dad reminded me, a successful writing career depends on writing about more than cancer, or cancer recovery, or the weird, gray, recurring area between the two if you have chronic cancer. So, today, we’ll be discussing another topic: metastatic human real estate development. I was inspired to do so after seeing Fearless Leader’s Pre-Superbowl Trailer Announcement (or whatever it is he’s leading up to to turn that idiotic wall proposal into something that looks like a win for him), and I realized, humans love building things. Sort of. We really like knocking things over and destroying things, but that’s not cost-effective, so we rationalize it under “development.” Given Fearless Leader’s obsession over massive, (presumably phallic) fortifications with his name on it, the ancient Egyptians’ decision to forever blight the landscape with over-sized coffins (yeah, I’ll say it; I prefer pristine wilderness to condos for dead kings), the Chinese emperor of Qin’s (I think that’s who it was) decision to build a wall that can supposedly be seen from space, and my own recent revelation that legacy is an important, innate human drive; I’m wondering if the American obsession with hyper-developing the landscape isn’t some sort of unhealthy mechanism for coping with mortality.

Prior to Mom moving to the Southwest, I’d lived in areas that didn’t really permit the sort of massive, urban outgrowth you see everywhere here (and in southern California, I’ll admit). If you’re in some place like Miami or New York or the East Bay Area - places all noted for rabid development - it’s pretty obvious that humans are hell-bent on knocking things over and building atop the rubble. You’d have to be blind not to notice all the construction projects. When you’re in a suburban-wildlands interface, you may not notice it immediately, but, when you do, it’s genuinely upsetting. There is now an entire subdivision in Mom’s neighborhood that wasn’t there two years ago, when she first moved in. That wouldn’t be upsetting, except I know what they’re building on: animal habitat. And plants. And assorted other things that make up an ecosystem. Or did make up an ecosystem, before human beings moved in (we’ll get to the photojournalistic part of this essay soon). To be fair, the American landscape has always been dominated by humans and their needs - Native Americans didn’t use concrete, but they regularly burned down large swathes of Yosemite to make hunting easier, and I can’t imagine they’d be the only ones. I have, on a shelf behind me, a relatively rare book titled “Nature and the American,” by a gentleman named Hans Huth. A brief inquiry suggests that Mr. Huth is not a Real American. His fundamental thesis is that Americans - or the European settlers who killed them, stole their lands, and then assumed the title - have a notoriously prickly, convoluted relationship with pristine wilderness. On the one hand, we have a philosophical history of the Noble Savage, in which modernity corrupts and ruins things (as someone whose life depends on access to very, very modern medicine, I say humans can take their false, pseudo-nostalgic narratives and shove them). On the other hand, that landscape has, traditionally, killed more Americans than our traditional enemy: other people (I hate to say it, but disease, deprivation, and hypothermia undoubtedly killed way, way more people than sexier causes of death, like arrows or bison). I can’t recall the sum total of his thesis/findings, other than that this weird sort of wink-and-nod attitude toward revering nature and hating it is a deeply American philosophy.

My own part in all this, is this: if you live in an area where there’s a constant, low-level of construction all around, you can fail to notice it as it happens. You can drive by a cement mixer one day, a road development crew the next, and then you miss it when you’re surrounded by McMansions. You (or me, anyway) only notice that the quail aren’t around.

Yes, that is a billboard in view of red rocks. I don’t like to imagine the hellish psychological state that would think we’d improve on a desert landscape by adding advertising.

That’s a very carefully-framed shot so that the insignificant, human buildings are hard to notice. I like to think it’s a preview of 5000 years and we wise up before destroying the mountains.

That’s a more-frequent view than one would think; humans separated from wilderness by nothing more than paved roads and walls. That’s how you get cougars prowling the backyards of east Los Angeles (and, if walls can’t keep out large cats who are only mildly curious about Fluffy, El Chapo - who has thumbs - isn’t going to be deterred).

That’s what all this is being paved over for. Over-priced real-estate and tacky fin-de-siecle street lamps. This isn’t a case of people coming in, needing a home, and then buying and/or building a house; this is a case of “if you build it, they will come.” Which, as we know from 2007, is a solid economic development tactic.

Here’s my basic complaint: those condos went up in less than six months. What they were built on took millions of years of geological development and natural selection to create. And, even if all humans die tomorrow, it’s not coming back. Seen through the lens of cancer, it’s invasive, destructive, and will eventually starve itself to death (or kill the host, which has the same result). And life afterward is perpetually changed - whether for better or worse is debateable, but we’ve just cashed in that ecological potential for McMansions. And all it cost was some worthless natural wonder. I realise I’m much more maudlin about needless, reckless destruction now than I was two years ago (brain damage!), but, still, who wants to live where there’s naught but ash and concrete? Certainly, you can’t eat asphalt, to the best of my knowledge; that might be something of a problem if the human population continues unchecked. It strikes me, suddenly, in the context of what I wrote about the world being like an art museum (that’s Peter Alison’s metaphor)(his book is also somewhere on my shelves), we’re hell-bent - as global warming closes in - on taking the planet with us.

It brings to mind Edward O. Wilson’s horrifying prophecy of life in just 80 years, from his book, “The Future of Life” (which is also somewhere on my shelves, I just haven’t seen it in a while):

Post Cycle 12

So, as predicted, I’ve been sleeping a lot. Like 10-14 hours a day. That’s not “I’m in bed 10-14 hours a day,” that’s, “I go to bed at 11 pm and wake up at 11 am.” Again, even though this would be upsetting otherwise, I’ve recovered from multiple neurosurgeries, and I’m aware there is a time when you just... well, sleep. Of course, in today’s hyper-metastatic media world, that means I don’t have enough time to devote to real news as it’s happening, which means I frequently wake up confused as to whether I’m still in the right universe.

I quit paying close attention to the news a day or two ago, when we were all outraged at the government shut-down actually shutting down government-run things... like national parks, as we should be. Today, the headlines are dominated by Gillette’s new ad  that quietly encourages men to be more introspective and improve themselves (this is controversial, for some reason)(before anyone asks, I’ve read the “reasons,” and it’s just Reddit - Internet  HQ for neo-Nazis and other lite-fascists - becoming angry).

In the mean time - and someone correct me if I’m wrong about this, or need some more context - Maxine Waters has come to power in he house financial services committee, where she will be joined by Alexandria Ocasia-Cortez (If 2017 and 2018 were written by Vince McMahon, 2019 will be written by Tyler Perry).

Also, America’s Sweetheart, Betsy DeVos, has gotten the Stephen King treatment and shattered her pelvis. Not normally a big deal, until you retitle it, “Education Secretary Who Opposed Civil Rights Protections for Disabled Students Now Confined to Wheelchair.” No, this is not a drill. As someone who’s spent some time in wheelchairs and walkers in the last 12 months, I hope she learns, first-hand, why concrete is the cruelest of flooring materials.

Also also, Fearless Leader - who, according to one urban legend, never has owned a pet (that explains absolutely everything) - supposedly told his “attorney” to lie to congress, which should be a massive, news-cycle dominating headline unto itself, since that’s the same behavior that got Nixon and Clinton impeached. The fact that it was released on Buzzfeed (I think) should be worth a discussion on how dramatically powerful the Internet has become in just a few years, since i remember a time just a few years ago when this was still mostly a medium for releasing Hulk Hogan’s sex tapes and letting closeted Nazis rewrite “The Protocols of the Elders of Zion.” Speaking of dark places on the Internet, Trump immediately got on Twitter to bash Cohen, which is the best litmus test I’ve seen for truth.

Somehow, this is all just Friday in America in the 21st century. And it’s not even lunch, yet.

POSSIBLE EXPLANATIONS: I finally woke up back on Earth 616, Doc and Marty got the Sports Almanac from Biff, or the multi-year annus horribilis (it’s like winter in Game of Thrones) we’ve been suffering is coming to an end.

Post Cycle 12

So, I did it. I mean, I did with a massive medical R&D infrastructure and some crazy black magic (which reminds me, I should stop referring to Warlock Sr as such and go for “Head Warlock In Charge*”). As I pointed out elsewhere, the life expectancy of a new GBM patient is 14 months. If yesterday’s scan is correct, I just went 14 months progression-free. In other words, I got a clean-ish scan (the last suspicious dots look like radiation damage that’s healing).

End Cycle 12 Tomorrow marks the initial end of the grand experiment in which my physicians regularly dose me on poisons in an attempt to kill something that is, historically, nigh-unkillable (I honestly don’t know if that describes me or brain cancer, at this point).

This period of waiting is usually marked with high levels of anxiety by cancer patients, hence the common term, “scanxiety.” I’ve heard of some people who  have to be seriously sedated during this time. I don’t blame them,

But you can’t be worried after a year of clean scans!

Let’s get one thing straight, as far I can tell, this never goes away Breast cancer survivors freak out before a mammogram. Sarcoma patients have crippling migraines before a scan. It doesn’t matter how triumphant or eminently treatable your disease is, you still freak out before one of these things. Taking Radiation Oncologist’s prompt at the start of things, this might be a sign that you’re still functioning However, to address Sarah’s recent question, in case I didn’t adequately discuss it previously; it does take a special kind of madness to be less terrified of the unknown (or a state in which the unknown is preferable), So, imagine making a large (but not fatal) bet on a roulette table. When that table stops, you may win (unlikely), or you may lose (likely), so, with those odds in mind, you learn to enjoy instability. Also, I have met (or heard of) 20-year survivors; and, if you go five years (four now) after diagnosis without a recurrence, metastasis or regrowth, the odds get much, much better. And there’s the break-neck pace of biomedical research - all I have to do is survive until the next big break-through (probably the Tocagen folks). In the meantime, yeah, every single MRI threatens to derail that plan. So, yeah, we’re a little sensitive about them. With that in mind, I will list the most-likely outcomes of the next day or two:.

1. ??? - Cancer, like divorce or bankruptcy, is surprisingly easy to avoid, if you can see it coming. The critical clause in that sentence, is, of course, that you can see it coming. I’ve done this three times (brain tumors) they always have caught me off-guard. With a 0 for 3 record, I don’t like the odds.

2. Some suspicious growth/regrowth/whatever, I get sent home. One of the good things about chemo and radiation is that it’s known for giving false positives, so, there’s a chance the Warlocks will notice something suspicious, but order me back in a month for another MRI, potentially followed by more chemo as-needed. Based on everything everyone has said, this is a fairly likely probability. This is the traditional long-term treatment of other cancers; in which treatment is given on an as-needed basis; it seems like if ever there was a good establishing test-case for Marizomib and Temodar, it’s me. So, yeah, I might be looking at an on-off life with some horrible poisons.

3. Nothing suspicious, I get sent home. If it seems like the theme of “I get sent home” is dominant, that’s not only wishful thinking, that seems to be protocol. Warlock Jr. has pointed out that most patients enjoy their first “drug holiday.”

4. Hyper-growth/recurrence/metastasis that needs immediate treatment. This already happened to me last year, I’m desperately hoping this is not the case, because I got really lucky once, I’d rather not do it another time. And I’m still suffering the side-effects of that incident.

Speaking of side-effects, I believe I’ve complained about my head itching. It still itches. I’m still scratching. And I wouldn’t normally be conveying this sort deeply personal information, except you might need it; but I’m still finding the odd scab, even though my sutures were removed back in November. I was warned beforehand that most neurologists and oncologists like to give patients at least a month between surgery and radiochemotherapy, because the latter just shuts down all your body’s healing mechanisms.I was happy to do it a year ago, because cancer now beats annoying scabbing later, but it’s still disconcerting to know that’s they type of retardation we’re talking about. It’s also a little heartening because, if that’s how long it takes the body to heal from relatively minor injuries, no wonder they’re seeing shadows and specters in my brain (yes, it will heal and/or scar, but it’ll take a while)(especially if you’ve been sticking your head in the microwave.

Q: How do you keep yourself moving forward when everything is so unknown and the impending doom is always lurking around the corner?

I honestly hadn’t intended to answer this one directly, off the bat, but I did get some insight this morning. So, like  everyone else, I opened my eyes this morning - that’s hardly news. What is a relatively new development (14-odd months) is the immediate sensation/realization that I’m in trouble and there’s something that needs my attention. These days, pretty much as soon as I’m awake, I’m very much in that state of hyper-alertness, Which is a shame, because sleeping through the coldest part of the day (morning) was one of my very favorite activities when I was living in the Northeast with an unreliable heater. So, I wake up, as most of us do most days, I’m broke, single, cold, tired (usually - again, based on how little sleep I’ve gotten throughout the year, there’s a chance I’ll just crawl off someplace quiet and sleep for a month or two), and have a terminal illness. I’m not happy about any of those descriptors, but it’s that last one that gets my attention.

I realize that as an agnostic atheist with an extreme mistrust in organized religion, me discussing belief might be a little inappropriate. Screw it. I’ve read numerous accounts of evangical Christians that there’s a lot of religious people who would like to know as opposed to believe. I say, screw that. You know Australia exists, and you know that Korea exists (or you should). You also should know that evolution is real, global warming exists and is correlated with human activity (Sorry, Mitch).You can go ahead and decry me and my godless statistics and science, which brings us to the important - the critical part - of this essay; how you react to facts, which is to say, belief.

So, the idea behind empirical science is that, if you have a solid conclusion (or set of facts to back it up), it doesn’t matter how many other scientists or studies are commissioned or funded, they’ll turn up supporting data. Here’s the problem with applying that sort of thinking to a life expectancy: It doesn’t work. That’s the basic, unfortunate root of the problem. Taking my own median life expectancy of 14 months, that’s the point at which half of everyone diagnosed is dead. That includes 90-year-olds, who, while their deaths are tragic, aren’t exactly a surprise, and 17-year-olds who are going to go the distance no matter what. With both life expectancy and cancer, it’s given to a single individual. If you’ve ever known identical twins and seen them after age 30, you know life can take some odd, unforeseen turns.

That’s where I’m all for belief (or, informed belief, let’s call it). So, the above photo is of a man whose initial life expectancy put him in the ground on Thursday (yesterday). Somehow, he’s still alive. Not only that, he’s alive and mostly-ambulatory (steep stairs are not my friend, and my left leg’s still unreliable). Here’s how this works, as regards belief: you make sure you do your homework about all the ways you’re likely to die soon. In the case of GBM patients, it’s usually as a side-effect of treatment, or because physicians withold treatment under the fear that continued treatment is worse than the disease. I rather cunningly undercut this by being so active that my oncologists - after sighing and lecturing me - had to order a knee X-Ray at one point to double-check I hadn’t permanently mangled myself on the free-weights.

Basically, here’s how this works. Like the questioner above, after the initial diagnosis, I was terrified that every day i woke up would be the last decent day I lived. Like everyone else, I initially thought this would be a death spiral of assorted physician consults, horrific treatment (I wasn’t let down in that one, at least), and a long build-up to a lingering death. I know some people who’ve lost their parents to this disease, I don’t know if they’d  agree with that assessment, but even they seem happier at having a little extra time with Mom or Dad than just shooting them upon diagnosis. 

Same applies here; I have all the same problems anyone my age has, with a massive addition: shortened life expectancy. That’s a big one to overcome, but, at the same time, let’s be honest; if I punch the Reaper in the balls, suddenly all the other problems I face are not only rather minor (almost good problems, you might say), but eminently solvable. And that drives you not only to put in the hours to solve your problems, but gives you the confidence to start chipping away at them.

Cycle 12, Day 16-ish?

So, in my various self-deprecating discussions about my achievements, I didn’t discuss the obvious ones. Since side-effects of cancer treatment have a deathrate that rivals the disease itself, I’ve gotten into absurd shape.I have lost no weight over the course of a year, but gone down by at least 5 inches around the midline. At the current rate, I’ll be back in my undergrad “trophy jeans” in less than a month. And I just finished the last round of chemo, as well as making some calls to the local community college about a class for becoming a brewer. How are your New Years’ Resolutions going.

So, yesterday, I had to get the last infusion. I suppose it’s due to the amazing competence of the nursing staff (I’ll have to write them a proper thank-you note) that it wasn’t until the last month or so that my notoriously hard-to-find veins started outwitting the nursing staff. It literally took an hour of prodding and sticking to start an IV (and they had to use the vein in my right bicep, I’m guessing it’s the basilar vein). As previously described in gruesome detail, the more proximal the IV, the nastier the side-effects; even if you roll in with a lot of CDB in your system. Yesterday delivered; I got the grand marizomib send-off: plenty of injection site/side pain, weird, minor hallucinations, and, a 7 pm bed-time. I also got those hallucinogenic dreams I’ve complained about for the last year. Unfortunately,they were intense dreams about my own demise. Hooray.

Gents, if you’ve ever wondered at how emotional some women seem to get about nightmares, I have a course of treatment. The dream - like all others - was defeated with a little logic (I’m donating my body to science, so the funeral bit was completely inaccurate), but you still start the day demoralized, disoriented, and upset. It happens to everyone sooner or later, I suppose; (like cancer). Today, I’m too sore and fatigued to do anything terribly productive, so I’m writing. Also I do have a bit of chemo brain, so there might be some typos in this.

Next week, I head back to the hospital for another MRI, and a final consult with the warlocks. As I understand it, there’s a few ways this is likely to go. 1. My nightmare is accurate, and I’m in the market for another surgery and chemo cocktail 2.Suspicious but hard-to-see/ID growth requiring me to come back for an MRI in the very near future. 3. MRI every 6-8 weeks, with or without continuing Temodar.

Cycle 12, Day 11

So, the day you decide to become a burden to society, you’ll need much better insurance than you have right now. I feel completely safe in making that sort of blanket statement, because, unless you have access to the Congressional insurance plan (frequently described as “The Cadillac” of benefit packages), your current insurance will be - feel free to quote me on this - completely inadequate. How do I know this? Well, I know that the price on one of my neurosurgeries - including multiple prescriptions, consultations, and, if you’ve read the archives, one flu vaccine given at 5 am (yeah, your reaction probably mirrors mine), was about $200k. A little birdy whispered to me the other night that Celera Genomics (who, I’m pretty sure, own the Marizomib patent and are working on brain cancer vaccines with Mad Scientist’s research group), and are planning on raising the cost for a year’s supply of no-brain-tumors to $300k. In other words, that median, 14-month life expectancy could be a jaw-dropping half-mil in no time. Before we continue: 1. Unless you’re in the ER, it is absolutely legal to let you die of a treatable disease (again, if you’ve never been thrown out of a hospital, just give it time). This is why a jury recently awarded a grieving family $30 million when repeated refusals from Aetna led to the death of a young mother. This is yet another one of those instances that serves as a warning as to why I shouldn’t be made ruler of the planet, because I would’ve had all Aetna employees and their families locked in the building, then burned down. The land - whatever was left - would be salted, and serve as the only legal housing for all high-level Aetna executives. 2. The word “inoperable” is largely subjective - it usually means the team treating you doesn’t have the confidence, knowledge, or technological sophistication required to treat you 3. As far as I know, there is no direct correlation between what you pay for a medical service, and the outcome. I realize that we don’t want to discourage physicians from using unconventional or risky means of treatment - especially in the case of rare or terminal disease like mine, but a recent review of European medical agencies  indicates that the US pays more, for worse outcomes, than any other industrialized nation.

If you’re on private insurance, look at your public options (again, a bunch of the more horrifying cancers are on that list of compassionate allowances that’ll fast-track you into social security and/or Medicare/medicaid)(before we bash poor-person insurance, I’d like to point out that I’ve been on it exclusively since July, and haven’t seen any decline in quality or frequency of care and consultations). There’s an entire “Adam Ruins Everything” on the unholy alliance between private insurance and the AMA, but I’d point out that it’s telling that the AMA only started supporting a public option for health insurance when patients started going overseas for joint replacement surgery (what Americans figured out is, you can get a hip replacement at half-the-cost  in Europe, Australia and Japan, with better long-term outcomes, plus you get to go to Europe, Australia, and/or Japan.

All of which is a way of pointing out that - this is true - that I got my health insurance card today (for those of us who aware of the F2′s trillion-dollar price-tag, the fact that these exist this is a national embarrassment) saying that they’ve changed their name from “CareFirst” to “California Promise Health Plan.” As a writer there’s a subtle difference between those two names that is less-than-comforting. But I’m sure it in no way denotes a difference in priorities or quality of care!

Cycle 12, Day 10

So, let's talk about cranky, noncompliant old men with medical conditions. More specifically, my father. As of the last writing, he had bladder cancer, which is being treated, and osteoporosis. Which is not being so treated. Dad did a bit of research on Fossamax and concluded that there's a general countdown from when you start taking it, and when it starts having dangerous, potentially lethal side effects. Understandably, he's putting that off for as long as he can.

However, even the mightiest oak will be felled, and, last Monday, Father was stricken with either the bubonic plague, or the flu, I'm not certain of which (and, since it's verboten to give chemo to flu patients, I have to keep my distance). My father does not enjoy going to the doctor's - my dog more willingly goes to the vet than Dad goes to the doctor.

For the latest medical issue, it took several days of nagging from Step-Mom, and me reading out more gruesome quotes from the Jim Henson biography (I am not making any of this up).

So, this morning, Dad got dragged off to the doctors' so they could at least put on some caulking and stop more mucus from oozing out. He came back with five prescriptions from his physicians: Cough syrup of some sort, an antibiotic, some sort of cough-suppressing pills, an antihistamine, and... say it with me... Fossamax. He's still not taking the Fossamax, as far as I know, but, initial research suggests that all current osteoporosis drugs contain some variation of the word "bone" in them. When I can't see the humor in that one, it's time to pull the plug.

I've heard from other GBM patients/survivors that there's a wide-spread issue/perception in which patients suspect that their physicians have a "if we can get two or three more years out of them, good enough." Which leads to some rather slap-dash, short-sighted patient management. Once again, I feel like I'm blessed (it's a weird sort of back-handed blessing) to have the premier brain cancer research group behind me. Also, having good rapport and following most of their directives is more helpful than you'd think. After I told Original Research Director 1200 years ago, rather bluntly, "I'm in this thing to win it," the researchers started tutting at things like my caffeine or aspirin intake (I've taken the aspirin out entirely, thanks to CBD). And they've ordered me to cut back on the anti-anxiety meds (done, again, thanks to medical marijuana). In other words, they try to impress on me that I should worry about long-term health consequences (we'll discuss how that's somewhat at-odds with eveyone's stated goal of nuking aned poisoning me into health.

Yes, Godsdammit, go ahead and pray for me. I get that people don’t want to be weird, and, for some inexplicable internet reason, I’m rapidly becoming some weird brain cancer idol/shrine on Facebook and Instagram (which would explain the creepy robo-prayer calls I occasionally get from :prayer centers” (I’m also old enough to remember when “prayer centers” were called “churches” and/or “temples”). So, here’s the deal: even though I consider myself resourceful, lucky (in a weird way), and cunning, there is literally no way I would know whether you’re praying for me unless you specifically ask or tell me. I appreciate consent, but, really, just go ahead and pray. Unless God is like a special delivery by UPS, and I have to be home at a certain hour to take delivery (again, theologically, that would explain an awful lot). My apologies for running roughshod over a good-hearted request and all that, but your own Holy Book* actually has something applicable: “ And when thou prayest, thou shalt not be as the hypocrites. are: for they love to pray standing in the synagogues and. in the corners of the streets, that they may be seen of men “ One almost feels a screenwriting possibility...

 EXT. GOLGOTHA - DAY - In the background, the followers of Brian are singing an unorthodox but merry song. A crowd gathers around one of the crosses. CHRIST: Why hast thou forsaken me?! CHRISTIAN 1: We haven’t forsaken you, dude. We’re just waiting for the “Kickstarter”pledges to reach the stretch goals before we save you. You okay, Jesus? CHRIST: Oh, rather.** I was wondering, if it wouldn’t be too much to ask for some pliers and a step-stool. CHRISTIAN 1: Yes, since they haven’t been invented, yet. But you seem like you got this. CHRIST: Hang on... CHRISTIAN: See you in three days, dude

I mean, I get that the LDS got into trouble for baptizing Anne Frank, and I’m not advocating that anyone do a post-mortem baptism, unless they can rig me up like “Weekend at Bernie’s,” but, at the same time, Anne probably has bigger, more pressing issues than what is or isn’t being done in her name (especially since we’re still hostile, as a nation, toward refugees and immigrants, which is what the Frank family hoped to be... before the US denied them travel visas). i can only base that on my own experience, but I feel it’d be faster and easier to get forgiveness than permission. I could be wrong, but I’ve never heard of anyone in dire straits getting angry, post-facto, at being prayed for.

So, today marks the second-to-last infusion before, in an ideal world, the Warlocks cut me loose for observation. Again, it’s been an utterly miserable year, but, at the same time, I do feel almost as if I’ll be adrift. When you put every last scrap of energy and potential into a task like this (not dying a horrible death), suddenly having time or energy to do things like carve out a career (or at least make some sort of money on this blog)(again, you guys are only getting a thin dribble of output; there was literally a brief time in my life where had three modes: writing, sleeping, and library).. At the same time, not aggressively and preemptively treating a cancer that is infamous for coming back, is somewhat scary, although I know unending chemo will eventually kill me.

Which brings me to today’s topic, body horror. This is the broad trope/genre of biology horror, usually best-seen in David Croenenberg’s films. It’s not an uncommon sensation for cancer patients to have some distal clump of cells come alive and attack. For most patients, however, that story usually ends with, “And then me arse fell off, and the doctors knew what it was!”(Reminder to self: schedule colonoscopy and/or other recommended preventive/screening procedures, ASAP). For neurosurgery patients - those lucky enough to end the story with, “And then I had neurosurgery,” It’s a slightly different story. For the first few months post-surgery, your sutures hurt like hell - like any major surgery would, I’d imagine. Then comes the longer phase, when they have an odd, itching/stinging sensation. For everyone keeping track, that’s not a continuous sensation - it’ll be maybe a minute or two out of every week, and, when you reach up to scratch, the pain receptors in your scalp will slap you away. After that, you enter the body horror part of neurosurgery, the itchy phase. This is the shortest of the three, and I will admit, horrifying dander is one of the less-offputting aspects of it (you don’t know what relief is until you scratch out self-dissolving stitches). I apologize for that graphic description, but it’s important. So, on November 1 of last year - er, 2017 - I had my most recent neurosurgery (that’s #3, for those keeping track at home). And then, as expected (There’s a reason I started the blog well before any treatment), everything in my life went into hyperdrive, and I didn’t have time to keep track of my new scars (and, really, once handfuls of hair start coming out in the shower, you’re disinclined to investigate further). So, it wasn’t until very, very recently that I realized how very itchy the right side of my head is. Which bodes well for the time frame of entering the recovery period shortly.

I mentioned in a previous post that I never got a PICC or CVS - which are semi-permanent venous access devices - because I had a shunt in my skull last year (2017), and one opening for opportunistic infections every election cycle seems a more-than-generous opportunity. In a year of chemo, that’s generally seemed like the better bet (for me, anyway), even though I have a blood draw every week. Today was the one time I’ve faltered in that decision. I have mentioned that I am notoriously hard to install in IV in  - it’s a horrible feeling when you’re on a first-name basis with all the nurses in the chemo ward; it’s dwarfed when not only can you recognise everyone, but the nurse at your station not only recognizes you, she literally ducks out on-sight and calls Alex over)(the nurse on shift today gets full marks for listening to me  complain about Alex - “He’s not terribly affable or gentle, and way too fast” - and retorting, “Well, that’s men.”). My previous find-a-vein record is seven. I don’t know if that record was achieved today, I stopped counting after four  However, eventually an IV was installed and Keith Richards’ essence distilled into my circulatory system. Then, the second hour, we all waited for my heart to explode (yes, that is exactly what they do, although they have an automated blood pressure cuff to aid their measurements). Then, oddly enough, I encountered a friend from a support group, Which wouldn’t normally be worthy of comment, except she’s a fan (hey, Sarah!), and, based the latest data, the folks who actually use social media and/or social publishing to keep tabs on me/read my stuff are: 1. Close friends and family that are legally obligated to do so

2. Distant friends and family that I probably haven’t thought about in years (hey guys)(if you’re worried that you’re “distant friends and family,” I’ll pray for you)

3. Inhabitants of Narnia or the Hundred-Acre Wood (or wherever people on the Internet live

4. Racing in or out of parking lots as I am leaving

The bad news for today - hopefully - is that this infusion is going to be a bad one, based on how sore I already am, just 3 hours post-infusion. The good news is, I’ve got an Advent Calendar of assorted mostly-legal substances to help my battered psyche onward, I mean, drugs are bad, kids, unless directly monitored and prescribed by a physician.*** Anyway, next week will be the last infusion, hopefully, and, even more hopefully it’ll be followed by a long, uneventful life. That would be ideal, for me; however, since my life is run on the principle of, “What would make the most interesting narrative” I’m going with, “Even odds I’ll come down with Ebola before Monday.”

Cycle 12, Day 7

It is 11 am on my birthday, and, apart from any keppra side-effects, I’m am stone-sober. I realise that’s hardly a boast for most people - “It’s before lunch in the middle of the week, an I haven’t done anything interesting,” but I have spent most of the past year - at least 75% based on initial observations - living a lifestyle that would make Keith Richards shiver. Possibly literally - it gets cold in those chemo wards. For those of you who missed my 2018 - and, to be fair, if there was a year to miss, on any level, for any reason, that was the year to step out on, I spent most of it getting dosed with various toxins. That was the actual selling point, chemotherapeutic agents should be poisonous, they’re designed to kill cancer. The fact that they make you feel like hell is a feature, not a glitch.

Tomorrow and next Tuesday will mark - hopefully - the end of treatment. Don’t get me wrong, I’m not looking forward to getting Tuesdays back, but, it’s worth noting, there is a security and comfort even in “Oh, it’s Tuesday, Time for a poisoning!” that you don’t get with, “Best of luck” and being herded out of the pen. The good news is, when you live half your life just trying to overcome the short-term, long-term, and immediate challenges posed by cancer, things like age or lack of progress in your life don’t bother you. As the guy who spent several recent posts bitching about his lack of accomplishments, I should point out that it’s like any other pain in my life - it’s unpleasant and I probably don’t dislike it any less than you do, it’s just not of such immediate horribleness that I flinch.The good news - and it is good news - is that you’re no longer quite the social pariah (”leper,” if you wlll) you are/were with cancer, even though you’ll get that brand for rest of your life. And there are enough self-help books, gurus, and advisers for what to do post-cancer that I’m not feeling quite as horrifically alone as I was a year ago. That’s good news and bad - on the one hand, if there’s a solid reference library for a problem, that’s an immediate disincentive for me to write the how-to guide on it. Which is only problematic because I’ve learned, in the last year, in order to be me, I must write in order to be me. Or in order to feel like me, anyway. And, in order to get that, I have to leave the house in the wider world. I know, it’s a bit of a Peter Pan-style let-down to figure out that careers, marriages, and most worthwhile endeavors are based on accident and random chance instead of steely determination and skill, but, the flip side of that; if I can just live long enough, sheer random chance will have to work in my favor. Gods know, I’m a bit overdue on that one.

I’m hardly riding off into the sunset; in a best-case scenario, I will have to return for an MRI ever 6-8 weeks for the following year, with, as my physicians have noted, follow-up chemo as needed (won’t that be something to look forward to). Theoretically, that’s the likely four-year plan right now (it takes five years of remission to be declared “cured” when you have chronic cancer. I’ll certainly keep everyone updated as best I can, and I have every intention of writing the, “So now you have Stage IV Cancer” book that’s in me (it’s in all of us, I’d darkly point out). And I’ll delve a little into pop psychology, There is a list on wikipedia of “cognitive biases” which are weird little flaws and logical loopholes in human behavior and psychology. Some of these are fairly obvious - the ‘confirmation bias” means we tend to attach greater meaning or significance to data or information that confirms our pre-conceived notions. The “Just World” flaw is the one to pay attention to the first few months after diagnosis. This is the built-in mechanism that keeps us from becoming Bat-man villains; it’s the basic belief in karma - do good, end up with good. So it can be something of a shocker to get a third brain tumor/cancer diagnosis (Side-note: they’re all as devastating as the first time you get it; as I mentioned in another piece, don’t go into the doctors’ office alone, tip the Lyft driver generously if you need to), I’ve heard people say they don’t buy into this, “Do good, receive bacon” morality; they don’t like i when I point out that, unless you’re out running down cheerleaders and indulging the Hunter S. Thompson diet (Wild Turkey, cocaine, and red meat), you probably have something like basic impulse control and, probably buy into the idea, at least a little bit, that people deserve what they get. Which can send you into a high-speed tailspin after a diagnosis like this - my own father gets asked, regularly, if he smoked (yes, briefly). His nurses don’t find it amusing when he points that the last time he had a cigarette, Hendrix was alive. The same thing will likely happen to you, and, that’s dangerous, because it invites self-pity over introspection. Now, I love a good wallow in self-pity as much as the next guy (or hippopotamus; it occurred to me that “wallow” might not be a verb most men would admit to), but, in those first weeks, you are very much on the clock. My solution was a hybrid nihilism/optimism approach (if you’re religious, you might want a different solution): nothing - good or bad - happens for a reason. We can discuss the scientific underpinnings of all this later; it’s related to chaos theory and “dependence on initial conditions.” Kim Kardashian and the president inherited their wealth and fame, John McCain was a multimillionaire with access to the best physicians and doctors in the world; he lasted 13 months. Despite that - that night encroaches on all sides and ultimately all we do will be buried in sand as the universe approaches heat-death, be kind and gentle whenever possible - even if it doesn’t make a difference to you, there’s a chance it’ll save somone’s life, somewhere. Here’s my advice: “You’re undoubtedly a decent person - or not someone who deserves this disease, and the uncountable minor horrors and problems that come with it. No one does; it’s just an unfortunate, inevitable by-product of multicellular life, and the flawed solutions evolution developed to address those by-products and problems. This will be the loneliest period you face, possibly in your life, as a result of those sort of “why me” questions. In the spirit of Neil Gaiman’s famous New Years’ toasts, here’s one for everyone starting 2019 in the hot seat. The coming trials and tribulations will test you more than you can start to imagine. You will experience situations and problems so grotesque and nightmarish you probably wouldn’t have believed someone if they told you about it without prior knowledge. And, depending on your cancer, there’s a not-insignificant chance you won’t see the next year, nor is there a guarantee you’ll usher in the next year. If you do, however, you will see yourself in superior physical condition than you are now; you will have to perform - consistently - far better and longer than you think you can, even if you have an army of personal assistants. It will be brutal and frightening - every single second of it. And you will never, ever see a definitive victory; you’ll have to learn to manage your ambitions, dreams, and life expectancy on a 4-18-month outlook.

Cycle 12 Day 6 (January 2)

I pen an annual, getting-old piece on a regular basis, but, realistically, this is the birthday I didn’t expect, Horribly, my life looks much like it did when I was 17, which, I suppose, is the point of this whole thing. I was 17 when I developed Tumor #1, and, not surprisingly in retrospect, that’s kind of where my life froze. In retrospect, that’s disappointing but hardly surprising - I’ve met cancer patients who take a year or more off to “discover themselves” (or, perhaps more accurately, discover who they are now that the costs can be accurately summarized). At the current rate, I’d need to sleep for a month before I could even attempt that.Herculean task. So, I usually just go straight back into the fray of my life, which, as I’ve discovered in the last year, is a mistake. The past year would normally count as an unmitigated disaster, not least because it signaled a really bad trend of tumors speeding up both in terms of lethality and formation - I had brain tumors at 17, 28, and 32. Based on that math, I’m overdue for the next one, which should be far worse.What? I hear you ask, “Could be worse than one of the - if not the deadliest - forms of cancer?” Well, that would seem to be the horrifying answer I’ve sent 12 months figuring out. I’ve sat next to people who literally didn’t have a face. I watched a woman sob in a parking lot - and, to my shame, did nothing (that incident was detailed in the archives). I had a stroke (or ministroke). I’ve probably shaved decades off my life via radiation exposure (I like to think that just makes me more-likely to become Godzilla). The guys at Toca are looking at immunotherapies. I absolutely do not want to face another brain tumor - again, I absolutely do not want that, and I do not want anyone reading this to face that - but it is feeling less like that’d be a final call, and more of another interruption. Which I think I should get a pass on, but, as I’ve learned this past year, the gulf between “deserve” and “receive” is vast, and usually requires a major organized religion to bridge.

So, even though I’m a year older, I’m in much better shape than I’ve been probably at any previous point, mostly due to my only new year’s resolution last year: 1. Get in better shape/go to the gym more often, and; 2. eat better. That worked out so much better than I’d expected, I’ve learned the importance of making resolutions out of things you’d be inclined to do, anyway. In that same spirit, I’m just going to 1. Get something like a real job (again, I’ve heard of some cancer survivors that spend years on that one, thanks to the delightful insurance issues that follow us around), and, 2. write more (ideally related to resolution #1, but I’ll use my powers for evil if the price is right).

Speaking of which, there seems to be massive demand for some one to address the question:

My physicians are offering to treat me, but if it only gets me 8 more months, should I take the treatment?

Yes. Goddammit, if there’s one thing I’ve learned that you should take away from it all, it’s that treatment options are not kept on the table indefinitely, and the milisecond they’re removed they do not come back, and the options get worse. I have been phenomenally lucky my whole life - or half of it, anyway - to get treated/diagnosed by the very best neurology/neurosurgery groups in the world. One thing that I wish I’d known a year ago is, untreated brain cancer - like all cancers - doesn’t just quietly sit on the sidelines until you hit your allotted threescore and ten (or 14 months) - it’ll be there with you, dogging you, slowing you down and making you feel it every step. And no one will force you to finish or continue treatment - I have two infusions left, if I don’t show up for them, I doubt anyone will ask; I’ll just lose my slot in the drug trial. Which, given almost a year of progression-free survival, I’d be a fool to lose, even though the side-effects are vicious. If treatment’s not working, they’ll actually yank you from it. However, that 14-month life expectancy is also based on decades in which physicians didn’t treat the disease as aggressively as they could. So, if you find a medical team willing to work with you toward an uncertain end, take that offer.

That seems to be the horrifying undertone you hear all too often in the world of terminal cancer. “Yes, we could treat it, but it would be a temporary fix.” These same people rarely like it when you point out that, based on market volatility, that retirement savings account isn’t worth the receipt it’s printed on. Yes, cancer patients - particularly terminal cancer patients - are just playing out the clock, but, realistically, that’s all any of us are doing. We just have to learn to operate in that headspace where uncertainty is a victory. If you think that’s a horrifying situation, well, you’re right, and, just wait until you become a parent (Author’s note: I am not a parent, nor could I with good conscience bring a child into the world with my genes)(assuming the chemo hasn’t already sterilized me). Yes, the very best I can hope for - and I am still somewhat hopeful; as Warlock Sr mentioned, you build on success, and each month/scan without a definite recurrence bodes better for the next scan. It’s a hard-sell, to be certain, so let’s put that in a slightly different context. Let’s say you accidentally won some local radio station’s call-in competition or something, and got an 8-14 month cottage rental in, say, Antigua. You may or may not take the time off, but no one would say, “Well, what’s 14 months in paradise going to do? We’ll have all the same problems at the end of it?” Same goes for cancer treatments - you’ll probably have a miserable time and die, but, since that’s now your all-weather, worst-case scenario, you might want to explore other options. Or not, it’s your life.

So, as mentioned, Priority #1 - assuming that scan in two weeks comes back clean - is to take a solid break from it all. By which I mean, sleep, eat, and exercise until body no longer feels like Trona. If you’re a regular reader, that might mean May... of 2024. If I awaken before then (and I know I’ve regularly threatened to go off and sleep for a few months)(it’ll happen sooner or later), well, then we get to discuss the hardest part of cancer: recovery.