Minimize My Morbidity!

The 4th Quadrennial meeting of the World Federation of Neuro-Oncology is being held in SanFrancisco at this very moment.

Where's the brain?

Where’s the brain?

(They should have hired me to do their logo.  How there is no giant glowing brain on the far side of the bridge makes absolutely no fucking sense.)

At this very moment, I am missing “The Sunrise Sessions” (wasn’t that a lost Fleetwood Mac album?) which include the following lectures:

Sunrise Session 1: Maximal Safe Resection of Glioma – Current Techniques

– Maximizing Extent of Resection for Gliomas while Minimizing Morbidity, Mitchel Berger
– Current Concepts in the Resection of Glioblastomas: Why Do We Do It and How Do We Do It?, Walter Stummer

Minimizing Morbidity?  
Why Do We Do It and How Do We Do It!?

I’m not making this shit up folks, THIS is how hilarious the world of brain tumors is.
(Or am I the only one who finds it this funny?)

I ‘ll tell you WHY you do it– so I don’t die!
I won’t tell you how you do it though– that part I still suspect is at least 45% magical.

I’m not sure there’s a conference in the world I’d rather be at (and would be more enthralled by) than the WFNO Sunrise Sessions.  When you get cancer in your brain, you tend to become a bit of a nerd about it.  Why aren’t they live streaming this shit, like they do all the stupid Apple product announcements?  As a brain cancer sufferer (owner? host unit?) we should all get a direct feed into our head of the goings on at this conference.

If anybody is reading this and is there at the conference with an iPhone 5S, I would happily accept a FaceTime live stream of this particular Sunday Sunrise Session:

Sunrise Session 2: Minimizing Side Effects From Radiation

– Cocaine, Codeine and Caffeine: Isn’t It Time To Just Wake Them The Fuck Up?  Charlie Breda
– Can We Modify the Risk of Cognitive Impairment, or Should We Just Tell Them How Stupid They’re Gonna Get?  Prakesh Jai’alai
– Is It Fair to Characterize Brain Beams As Life-Saving Double Rainbows? Jerome McDougle

OK it’s possible that I made those ones up.  But I can’t be blamed, after all– I have a hole in my brain.  Who knows what those phantom neurons are up to anymore–  I certainly can’t be held responsible.

And by the way–  If I’m still around in 4 years, will somebody please inform me that this conference is happening BEFORE it actually starts happening?   I should have a really cracking brain cancer standup routine by then, and would be more than happy to deliver it as the opening Keynote.

My Routine Inspection

Another day, another cliffhanger.

But let’s put this particular one to a quick end (because god knows we want to prolong the Big One as long as possible):

The results of My Routine braInspection this week were…

GOOD!

It's good! Chad 38, Brain Cancer 1.6

Chad 38, Brain Chance 1.6

NFL SuperRef Ed Hochuli was unfortunately not there to weigh in on the results, but Doctor Who was, and he was enthusiastic (although his biceps are not quite as impressive as Hochuli’s).

The short of it is this:  things have looked stable in there, and if anything the signs of tumor have been regressive.  (As opposed to progressive, which in the case of slots is good, but in the case of brain cancer is very, very bad.)

The long of it is:  you can never remove every last cancer cell through surgery (even two surgeries), which is why you hit yourself in the face (and inside the face) with all that chemo and radiation and chemo again.  In my case, as I went through all of that treatment there was a bit of stuff appearing on the scans that looked like it could be cancer.  But it could also have been healthy healing tissue.  No way to know unless you have brain surgery #3, or you wait and see what happens with it.  If it grows, it’s bad.  If it doesn’t, it’s good.

I chose to wait and see.  And as we went from each 2 month MRI to the next, the ghost in my brain continued to shrink in size.  Which is good.  Which means it was probably just inflamed healing tissue the whole time.  Not cancer.  Or not a lot of cancer, at least.  Which is good.

If this all sounds familiar to you, good– that means your brain is working.  Even better, as I was typing it it started to sound familiar even to me, and so I went back to see if I’d already explained the above already.  Turns out I had, in September.

I mention this to point out (to you and myself) that my memory seems to be working a little better again.  And my brain, in general.  I’m a little clearer, a little less forgetful.  Which is great.  Really, really great.

This isn’t to say I’m going to stop using the “I have a hole in my brain” excuse– because I am definitely not going to stop using that excuse.  I still have a hole in my brain, and I still am some kind of a shadow of my former self (which is very luckily starting to resemble my former self.  Just a better version of him.)  I still forget who I had dinner with last night sometimes, and the entire  last 2 years seems like it all happened in one day, 89 years ago.

And please don’t be the 9,457th person to tell me “Oh that’s normal, my memory is getting shitty too, we’re all getting old, Chad!”  Because if you are  the 9,457th person to tell me that, then you are going to have to trade me your totally non-cancerous brain for my totally-cancerous one.  Deal?  Deal.

Which brings me to another point (that I’m also sure I’ve mentioned before, if only because I trust that I’m getting repetitive):  There are all sorts of things that people say to you when you have brain cancer that don’t always ring the way they want them to.  These things are usually said with the best of intentions (or at a minimum slightly above average intentions), but when you’re the guy or gal with the cancer in your brain they sometimes sound funny.  Or weird.

One such example that many of you have already heard me go on about:

“Good luck with your MRI!”

If you’ve said this to me, thank you.  This means you are a nice person (or at least nice-ish).

Since I am very possibly not as nice a person as you, this particular phrase always gives me the creeps.  I’ll tell you why.

Wishing somebody good luck on an MRI is like wishing them good luck opening a birthday present.  Whatever’s in there is already in there– they just don’t know if they’re gonna like it yet.

I’m not saying this to be a smartass (even though I definitely am a smartass).  The point is only that the test itself is meaningless.  Time spent worrying about it is time wasted.  And if you’re the kind of person who is having MRI’s every 2 months, time is probably a pretty valuable commodity to you.  Fretting isn’t your best use use of it.

I’m again getting the sneaking suspicion that I’ve already written about all of this, but maybe that’s because I’ve talked to a few of you about it already.  Or maybe I have written about it before.  I have absolutely no idea– I don’t remember a damn thing that’s on this blog besides that Lincoln thing and the fact that I wrote “glioblastoma  in rainbow letters.

If I have already written about this, somebody please be a smartass and tell me where and when?

Anyway, to continue on the repetitive cliff hanger streak… next MRI in 2 months!  At that point it’ll be 2014, and I’ll be 38.  Unless I get hit by a bus.

Ooo!  Yeah!  One more thing!  Please don’t be the 945,768th person to tell anybody with any kind of cancer that “we could all get hit by a bus tomorrow”.   Cuz trust me, that kind of philosophizing about death when you’re not actually so deeply and profoundly faced with it is not going to help them.  It’s like a rookie telling Satchel Paige to “walk the guys with the big biceps.”  Well intentioned, but… you’re only really saying it to yourself.  So say it to yourself.

See what a pain in the ass I am?

I blame my mother.

😉

Pressing the “PUBLISH” button and waiting for the phone to ring…

PS:  Mom don’t worry, God punished me for writing that last line: I forgot about the soup I was reheating while I was writing this post, and I totally burned it.  (I can hear your voice right now saying “See? He did!”)

PPS:  Yes, it’s the same chicken noodle soup I made with that roast chicken you and Linda picked up for me that I complained was too small.  See what an ungrateful pain in the ass I am?

PPPS:  Now that I’m eating the soup, it actually tastes better than it did before… reduced, a little more flavorful.
See how funny life can be?  Burnt soup, even better than the original.  Go figure.

Clinical Trials

I  am a human being with a type of cancer in my brain for which there is no cure.

To recap (in case you haven’t been following this blog, or if you have and I’ve obfuscated the situation with my silliness or my long-windedness or my silly long-windedness), I am dealing with the above fact in the following ways:

1)  Living each day not like it’s my last, but like I know that I’m going to die.  Because I am going to die.  And my best bet is to do everything I can to set up my own ending like a sweet ball on a tee so that when it is my time to go out, I will go out with a laugh, and a wink, and a smile, and little to regret and much to be thankful for.  So if you see me these days enjoying myself, or working hard, or fretting over missed opportunities or eating chocolate, that’s why.

2)  Doing everything that Modern Medicine (and other schools of thought, as long as they have some basis in scientific fact, or logic, or reason) says I should do to die not of brain cancer but of something else, a long time from now.  Or even die brain cancer, but a long time from now– that would be OK too.  That would be grand, in fact.

3)  As part of the above (and as allowed by my extraordinarily good luck) I am participating in a clinical trial for an anti-brain cancer therapy called ICT-107.  Tomorrow, I will get the final shot of this stuff (which is made of my own white blood cells) in my right armpit.  There is a 1/3 chance that I will receive (and have been receiving this whole time) a placebo.  There is a 2/3 chance that I’ve been getting the real thing.  Either way, it may or may not be working.  More importantly: either way, my participation in this trial is something that I’m extraordinarily proud of because whether it saves my life or not, my participation in the trial (and my death or survival) will aid our understanding of this disease and will (very possibly) help people in the future not die of it.  And speaking of which, the last thing I’m doing is…

4)  Working on something (writing something) that I hope (oh how I HOPE!) will help to facilitate more research into more trials like this one, that will help to push us toward the day when there is a real cure.  And until that day comes, I hope (oh how I HOPE!) that the thing I am working on will give people hope.  Because most days, for me at least, hope is enough of a cure.

Speaking of trials and cures and hope, I read an article this morning while doing research (i.e. distracting myself from writing) that absolutely blew me away with its clear and concise and well-reasoned explanation of how clinical trials work, and why they are important.  With apologies to the New York Times subscription model (which I support with my own duckets), I am reposting it here in its entirety.  I strongly urge you to read it, in the very least because it’s far more clear and concise and well-reasoned than anything I’ve written on this blog.

Thank you, Doctor Sanghavi, I absolutely loved this piece.
(here’s the original link)

03drugs-articleLarge-v3

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The Pills of Last Resort

How Dying Patients Get Access to Experimental Drugs

By DARSHAK M. SANGHAVI, M.D.
Published: October 31, 2013

It was shortly after the breadbasket arrived last year at the Temple Bar near Harvard Square that Sarah Broom first told me about the last-ditch plan to save her own life.

Broom’s mere presence that evening was something of a miracle. Several years earlier, in 2008, while pregnant with her third child, she received a harrowing diagnosis. A 35-year-old English lecturer and poet living in New Zealand, Broom developed a persistent cough. She saw doctors in Auckland repeatedly over the course of a few months, but they didn’t want to do an X-ray on a pregnant woman. Finally, her shortness of breath became so severe that they relented, and 29 weeks into her pregnancy, she was found to have a large mass on her lung. She underwent a cesarean section — her daughter was born almost three months early — and a biopsy.

Broom had advanced-stage lung cancer. “I was told nothing could be done to cure the cancer, but that various treatments could give me time,” she recalled. Less than 1 percent of patients live more than five years.

She endured chemotherapy for weeks but then developed severe pelvic pain. To her horror, tests showed there was a new plum-size tumor on her ovary that wasn’t present at her C-section. The cancer was spreading relentlessly. Broom’s doctors predicted she had only a few months to live. She worried about her two sons, Daniel and Christopher, ages 5 and 2; her husband, Michael, whom she’d been with since they were teenagers; and her premature baby, Amelia, who was still hospitalized in the newborn unit. “My determination was to live, to live a long time — what else could I do, with three little kids depending on me — but at this time, it was clear that the situation looked pretty dire indeed,” Broom told me.

In desperation, she called friends around the world, including Meghan O’Sullivan, a former deputy national security adviser in the Bush administration, who contacted Bruce Chabner, the director of clinical research at Massachusetts General Hospital Cancer Center in Boston. Chabner asked Broom to send him her biopsy, so he could analyze its DNA. Her tumor had a mutation in a gene called anaplastic lymphoma kinase, or ALK, which occurs in about 5 percent of lung cancers. A Japanese group discovered it only a year earlier. Chabner knew that the drug company Pfizer was developing a new compound called crizotinib that might treat this mutation. The trouble was, it had been given to only two ALK-positive people before, and one died anyway. Still, it was Broom’s only hope, and Pfizer agreed to enroll her in a trial in Australia.

Incredibly, the tumors shrank by half, and Broom led an almost normal life for two years. Then the cancer returned. Various drugs were tried; none worked. Through Chabner, Broom ultimately got in touch with Alice Shaw, an oncologist who knew of two promising new compounds, AUY922 and LDK378, from Novartis, that might treat ALK-mutated lung cancers. They were two of the 23 Novartis anticancer drugs that were so early in development that they weren’t yet named or on the market. Because the company had no sites for the trial near New Zealand, Broom left her family and flew to Boston in late 2011 so that Shaw could treat her with AUY922.

But Broom did not respond to the drug and instead developed large new metastases in her brain. Her final hope was LDK378, but Broom was worried that she’d soon be too sick to travel. She decided to return home even though she would have no access to the drug.

Shortly before she left, O’Sullivan invited her out with a few other friends to the Temple Bar, where I met her. As we spoke, we discovered an unexpected connection: Alice Shaw was a college classmate of mine. Broom explained her and Shaw’s master plan to get Novartis to release the drug. It was simple, really. Broom would send a letter begging the Swiss pharmaceutical giant for compassion.

“Dear Novartis,” she wrote. “I am writing to plead with you for compassionate access to LDK378. . . . I have three small children, and I cannot yet give up.” Couldn’t the company, she asked, just sidestep the clinical trial and send her the medicine that could save her life?

Before drugs in the United States can be prescribed by doctors and bought by patients, they must undergo three stages of rigorous clinical trials and approval by the Food and Drug Administration. This safety requirement dates back to 1962, when the sedative thalidomide was revealed to have caused thousands of birth defects. This policy has helped cause drug-development costs to skyrocket to hundreds of millions of dollars and drug approval to take up to 10 years, but it has also protected the public from untold risks and side effects.

Circumventing the deliberate pace of clinical trials can be dangerous, as my own father’s story attests. Short of breath for years and told he had asthma, he actually had idiopathic pulmonary fibrosis, a disease in which the lungs quickly and fatally scar. The New England Journal of Medicine reported that interferon gamma-1B could help, but the 1999 report included only nine treated patients. The F.D.A. approved the drug a few years earlier, but for only a rare genetic bone disease or an immune-system disorder, and it could cost tens of thousands of dollars for a course of treatment. My sister and I, both doctors, wrote a letter to my father’s insurer pleading for them to cover this off-label use. Amazingly, the insurer agreed.

Three times a week, my father gave himself an injection of interferon gamma. Not only did the drug not improve his condition, but it also caused raging fevers that left him confined to bed in terrible pain. He died in 2001. Three years later, N.E.J.M. published a far more thorough study with 330 patients that concluded interferon gamma was not only ineffective against the scarring disease but also caused respiratory infections. It would have been better if my father never took it. And because we had found a backdoor way of getting it — he never joined any study — no drug company or regulator learned anything constructive from his death.

Consider what might have happened if more people with idiopathic pulmonary fibrosis followed my father’s path: 330 people may never have enrolled in the study that clearly showed that the drug was useless for his condition. Which is why last year, after the journal Science reported that the drug Targretin, already approved to treat skin cancer, reversed Alzheimer’s disease in mice within three days, federal experts writing in N.E.J.M. warned that “even if patients and families are willing to take the risks [of Targretin] for the potential benefit, the physician’s answer should be no.” Doctors, in other words, should instead tell patients to enroll in placebo-controlled trials, not least so we can learn whether Targretin really helps fight the disease.

Nevertheless, for desperate patients like Broom, the pace of clinical trials can be lethally slow, and patients have successfully argued for “compassionate access” to unapproved drugs. The first compassionate access was granted for a drug called AZT, originally created to treat leukemia, then shelved. In 1985, the Burroughs Wellcome lab sent it to the National Cancer Institute, where, incidentally, Chabner was director of the treatment division. AZT was the 11th drug tested in a shotgun approach against a new virus soon known as H.I.V., and it worked. By 1986, a key study showed the drug saved lives, but final F.D.A. approval would normally take a year. Dying AIDS patients couldn’t wait. So Robert Yarchoan, along with other N.C.I. investigators who helped develop AZT, worked with Wellcome, the F.D.A. and other federal agencies to create an “open-access clinical trial,” which served as a way to release the drug free to almost one-third of all AIDS sufferers in the country. It was a shrewd way to bypass the usual F.D.A. timeline for drug approval.

Pushed by the advocacy group Act Up, the F.D.A. agreed to allow pharmaceutical companies to offer compassionate access to other promising AIDS drugs. The activists for patients with Alzheimer’s and cancer soon demanded access to promising drugs as well. “AIDS created a terrible, wonderful model for us all,” one activist told The New York Times in 1991. In 1999, a 19-year-old college student named Abigail Burroughs unsuccessfully fought for compassionate access to experimental drugs owned by ImClone and AstraZeneca to treat her head-and-neck cancer. After her death in 2001, her father founded the Abigail Alliance, which sued the F.D.A., arguing for a constitutional right to early-phase drugs. Though the courts ultimately ruled against the family, the F.D.A. did recently create a program that would make it easier for companies to release experimental medicines — if the companies agreed to do it.

But not all companies willingly allow compassionate access to drugs in their pipelines, and ImClone’s and AstraZeneca’s reluctance makes sense on some level. Only 6 percent of early-stage cancer drugs ever come to market, because many are found to have severe side effects or simply don’t work. Given those odds, companies hesitate to do anything to jeopardize a product too soon. If they give drugs away, a disastrous side effect or other poor outcome could spur bad publicity and extra scrutiny from regulators. Even more important, if doctors simply let people take untested medicines without going through all the clinical trials, drug companies would most likely never get anyone to enroll in them, never get the data on safety and efficacy for F.D.A. approval and never pass the gateway to big sales. “Even if patients with cancer are willing buyers,” writes George Annas, a Boston University expert on medical law, “drug manufacturers are not willing sellers.”

As a public-health advocate, I know that if we simply let people have access to untested medicines without those trials, we will never learn which ones are effective and how best to use them. But to a physician coming face to face with frightened and desperate patients in the clinic, the case for the greater good seems less compelling. After all, the promising drug may be the patient’s last and only chance. Every now and then, desperation leads to success. That’s the hope that led Broom to write to Novartis.

Not long after our dinner, Novartis responded to Broom’s letter begging for LDK378, denying her request but giving no reason. Shaw decided to make a more personal appeal. She asked Broom to have her three children and husband hand-write letters. Daniel’s letter read: “Dear Drug Company . . . Mummy needs to finish reading ‘The Lord of the Rings’ to Christopher and I, we are at ‘Return of the King,’ siege of Gondor, page 853. There are 1,069 pages. . . . I love my mum, please help her to get better.” Shaw topped it off with a montage of photos: Broom holding her daughter, Amelia, in an angel costume; Broom wading with her kids in a lake. In her own letter, Shaw made the detailed scientific case for LDK378 and referred to her authority as a Harvard Medical School professor and the lead recruiter for major cancer trials.

She gathered the packet and sent it to Barbara Weber, Novartis’s head of early-development oncology and senior vice president, who had the authority to release LDK378. “I apologize for e-mailing you directly,” Shaw wrote, “but I have exhausted all other options.” She also sought Weber out in person at an oncology conference in California. Weber was so moved by the packet that she decided to give Broom the LDK378.

Right now, there are no specific guidelines that determine who is eligible for compassionate access. Weber told me that she gets only a handful of requests and that she usually approves them. (Shaw told me she made numerous requests for Broom to get compassionate access to Novartis’s LDK378 but was repeatedly denied. Weber said she was not aware of those requests.) The fact that Broom’s appeal was so personal and got directly into Weber’s hands made the difference, but few patients actually have the resources and connections to make that happen.

Novartis mailed Broom a package of LDK378, and she began taking the pills. Within weeks, her headaches were gone, and scans showed that her tumor almost entirely disappeared. In August 2012, she was on vacation with her family at a national park near her home when I reached her by Skype. We talked about a children’s-book character she created named Freya Fantail, a small bird who helped ill animals. Broom was particularly grateful that a close friend had illustrated the manuscript with vivid crayon drawings. She’d resumed reading “The Return of the King” to her sons.

To be sure, the events leading to Broom’s miraculous improvement arose from a series of advantages. She was a well-connected, highly literate Oxford graduate who could afford to travel to Boston from New Zealand. She happened to know O’Sullivan, who in turn knew Chabner, a globally respected cancer researcher. And of course, Shaw, her oncologist, wouldn’t accept Novartis’s initial denial of LDK378 and knew how best to navigate the system. Few people are so lucky, as Broom was the first to admit.

Still, access to unproven medicines cannot be an absolute right; it must depend on review by an experienced doctor, like Shaw, who can weigh complex medical data to make educated guesses for treatment. Otherwise, patients are too vulnerable to charlatans. Recently, Shinya Yamanaka, who won the 2012 Nobel Prize in Medicine for his work on human stem cells, described to me the pleas he and his colleagues receive. His work has created the possibility of one day growing new organs, and patients come to him asking for all sorts of unproven treatments. When they’re inevitably denied, they may seek out people like the Beijing neurosurgeon who treats paralysis by injecting aborted fetal tissue into the spine, even though there is no conclusive testing to suggest it works.

This is where patient-advocacy groups could make an impact: by creating easily accessible tools to help such patients better understand their options, connect them with the latest science and point them to promising drugs under development. The fact that Barbara Weber gets only a half-dozen or so requests for compassionate use each year suggests that very few patients know the possibility even exists. Advocacy groups could also ensure that companies price new therapies fairly. (Last fall, after doctors from Memorial Sloan-Kettering hammered Sanofi and Regeneron for the high price of one of their cancer drugs in a New York Times Op-Ed, the companies dropped their price by half.) Government resources like clinicaltrials.gov could better organize and curate studies for patients and disclose which drugs are in the development pipeline. In these ways, compassionate access could become less about luck and more about what’s best for patients and for science.

Broom’s cancer responded to treatment with LDK378. But her reprieve again proved temporary. After almost a year, LDK378 stopped working, and Broom truly was left with no options. Earlier this year she stopped responding to my e-mails. She died on April 18 in Auckland, surrounded by her family.

Around that time, her husband, Michael, had taken to wearing three bracelets carved from bone. An American woman named Linnea Duff had given Broom the bracelets to symbolize that she was the third person to get crizotinib, the cancer drug Chabner first prescribed. Duff was the fourth to get it, for her advanced-stage lung cancer, and she bought four bracelets for herself. Like Broom, Duff had a remarkable response, and the drug kept her cancer at bay for years. She recently began a trial of LDK378 after having a relapse, but she has already survived almost seven years since her diagnosis, longer than even the best prognosis.

Broom, too, survived for years beyond what doctors first told her she could expect. She wasn’t supposed to see Amelia’s first birthday, and instead she was able to celebrate her fourth. For long stretches of that time, Broom was able to live a normal, relatively healthy life. All this was undoubtedly due to the various drugs she was able to get through compassionate access.

Duff and Broom used to playfully refer to each other as “No. 3” and “No. 4,” Duff told me, but now only No. 4 is left. “I resolve to never give up,” she said, “and I start each day saying, ‘I’m alive, I’m alive, I’m alive.’ ”

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PS: If you got this far, thanks for reading!  I’ve got an MRI tomorrow in addition to my last trial shot.  I’ll post the results on the blog, along with (hopefully) a photo of a needle being stuck into my armpit.

God Is In The Pattern, and The Pattern Is Good

“God is what’s good in me.” – John Gunther, Jr.

As an unashamed atheist it surprises me the comfort and solace I find in a Catholic church.  But when I ponder this (the structure, the history, the longevity, and my reaction to it) it takes no more than a moment to become completely unsurprised.  For…

God is no less real than anything we make to be true.

Because it is in this making, this fashioning (of imagination, or iron, or emotion or stone) that we find the pattern in life, and amongst the universe. 

And God is in the pattern, and the pattern is good.

We see with breathless awe the pattern in nature (a forest, a snowflake, human love, the human mind) and in our awe we seek to ascribe a name to it; a reason, a cause, an explanation.

But in our naming of the beauty and grace of the world, it is equally important for us to not forget:

That the beauty and the good which we make to be true is no less real than that which we see before us, and around us, with such breathless awe.

It is in our hands to make more of it.

 

Major duomo

Writing and Writing in the Widening Gyre

Writing is the only thing I want to be doing… except all the pointless distractions that I invent to prevent myself from getting in the chair.

Even once in the chair, there I go writing something like this instead of what I should be writing.  (What should be writing?)  Or checking my email or bank statement.  Or the score of the Sixers game.
Shit I wanted to check the score of the Sixers game.

~~~~

I want to feel like an active participant in life again.

The main stumbling block is that I’d set the bar pretty high before, so it wouldn’t do just to “get back to work” or “build something” or “have a family.”  It wouldn’t do to be doing anything less than a multitude of wonderfully exciting things, to keep my insatiable curiosity mostly if not completely satiated.  Or wouldn’t it?  Wouldn’t it do?  What exactly would do?

The point is I feel that the (still functioning) intellectual portion of my brain is missing more things than it’s absorbing.  That missing-to-absorbing rate wasn’t even satisfactory before, but now it’s far less so.  Luckily, I went through an intense period where it was OK to reduce focus onto the insane here and now:  The Wild and Unpredictable and Ceaselessly Entertaining Trip of Getting and Fighting Brain Cancer.  It was OK during that period to not know how the Sixers were doing, or to be reading the books that I’ve been wanting to read, or seeing the movies I’ve been wanting to see.  I was busy not dying, and my brain didn’t work too good.

But now that The Wild and Unpredictable and Ceaselessly Entertaining Trip of Getting and Fighting Brain Cancer has settled down a bit (for the time being), I feel my focus wanting to shift back to the larger world beyond me.  Beyond my cancer.  Beyond cancer.  And I’m excited that I’m able to do so (for the time being), but having already been frustrated with my limited ability to absorb the world before “the accident” (Ooo I like calling it that, I’m going to call it that now.  I’ve never been able to turn that heavy & intriguing phrase, but have always admired it.  “Oh, that was before the accident.”  Or “the incident” {“accident” is better}), I’m no less disappointed (quite a bit more so in fact) in my even more limited current capacity to learn as much as possible and do something with what I’ve learned.  There simply isn’t enough time— and here I’ve got a hole in my brain, which you think would be good for storing things but turns out it’s bad— and there’s too much awesome stuff out there and where do I begin.

But I’m just bitching.  Now that is pointless (not entirely).  It is a distraction though.

Hey:

You can’t know everything.

You can’t have everything.

You can’t control everything.

You can only point yourself in a direction, put one foot in front of the other, and enjoy what comes to you and what you make of it.

Here I go.

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PS: When I began this blog, I said something about how I’d never wanted to write a blog because they always seem so self-indulgent.  With this post, I fear I have officially crossed that line into Official Self Indulgency.  I am, for some reason, publishing my personal diary/journal on the Internet, and by this act adding to the Great and Insurmountable Global Heap of Probably Useless Information that I’ll never be able to get through.

Well I may not have read everything… but, if anything, at least I’ve read this blog.

I forget most of it already though.

~~~~

Here I really go.
To write something I hopefully will remember.

(Or, even better, that someone else will.)

LIVING EVERY DAY LIKE IT’S YOUR LAST

…is a goddamn terrible idea.  If any person or self help book or famous quotes website has ever recommended you try living every day like it’s your last, I guarantee the person doing the recommending has never tried it herself.  Or she has, and she’s completely insane.  Because I’ve been living today like it’s my last, and before I even got to lunch I realized if I was doing this daily I’d wind up killing myself before dinner.  And then it really would be my last day.  Every day.  And I wouldn’t even have had dinner.

Let me give you an example of one (of the many, many) problems with this type of relentless day-seizing: if it’s your last day, does the day end at midnight?  Or does it end at sunset?  Because this whole time I was thinking midnight, and the sun’s about to go down and if the Hasidim are right… Well it’s just that I had 11:59 in my head not 5:58, and there’s still a bunch of stuff on this list and god thank god it was daylight savings time today cuz that gave me an extra hour but… shit we changed the clocks!  It’s 4:45 but that was 5:45, and now the sun’s gonna go down in like ten minutes.

Shit!  It’s midnight, not sunset, right?

Right??

Ok quick, listen, ‘cuz either way I don’t have a lot of time — I mean when it’s your last day ten minutes is about as good as six hours but I’m wasting time just typing this so just listen OK?!

OK.  It’s profoundly impractical to go through even one day thinking and acting like it’s your last, let alone Monday through Sunday for the rest of your life (which is supposed to be only the rest of today anyway).  I mean first of all, if you’re actually gonna do this— and I just tried— you’re on the phone all day.  I mean, ALL DAY.

It’s your last day on earth!  Think of all the people you have to call!  Like, your mom (duh), and that’s gonna take a half hour, and all the other assholes in your family, and anybody you’ve ever cared about or had a crush on or just wanted to sleep with cuz there might still be a chance, and all the people who are a little more religious than you who might have some say in the Heaven Level you get stuck in forever…  oh and that guy who watered your plants last week who you forgot to thank.  ‘Cause he actually owes you fifty bucks and… shit do I still have that guy’s number?

God, you’d spend half the day just trying to find all the phone numbers!  I mean, even if you had a killer Rolodex and a secretary and you get up at five, if you’re really living today like it’s your last day on Earth you’re slammed with phone calls until lunch time at least.  (And it’s not like you can just group text everybody and be like “C U later!”  Cuz you won’t see anybody later.)  And even if you’re lucky enough to get off the goddamn phone, now it’s already lunch and what the hell are you gonna eat for your last lunch ever?

You eat the best fucking steak in the world is what you eat, even if you’re a vegetarian (especially if you’re a vegetarian) and… fuck why didn’t I just have steak for breakfast?  I mean that omelette was good but it was a little burnt on the one side and aww man that was my last breakfast EVER?!  And they gave me home fries instead of hash browns??!  And they totally forgot the orange juice!   And that bitch better pray for me because of that sweet tip I left her that in retrospect she totally didn’t deserve.  But at least I’ll go to heaven.  She was really cute though.

Speaking of which, if you’re a certain kind of red blooded male you very well might find yourself spending 99% of your entire Last Day Ever just pathetically trying to have sex with someone who’s hotter than anybody you’ve been with in your whole life, or just having sex with anyone at all, all day, while eating steak at the same time, which is impractical unless you happen to run into a super hot nymphomaniac vegetarian who also happens to be living her day like it’s her last.  And she finds you attractive.  See what a pain in the ass this is?

And beyond just the practical stuff— ‘cuz that was just the practical stuff— there’s also the entire mythical world of shit that you’d really want to be doing on your last day ever but probably can’t but it’s nice to dream and who knows it’s your last day on Earth and you’re gonna die soon so why not shoot for the moon, right?  I mean isn’t that what this whole bullshit idea’s about anyway?

Oh it’s my last day on Earth!  I wanna be… I don’t know… hmmmmm… drinking champagne while skiing in Switzerland with a jet pack on and a Ferrari waiting at the bottom of the hill so I can drive it 900 miles an hour through the Alps (literally through the Alps) and then shoot out of a cliff into Italy and jet pack straight into the Duomo in Milan cuz I wanna see that again and plus I could confess one last time, and that couldn’t hurt, right?

Cuz something like THAT is what I’d actually like to be doing if I was literally living today like it’s my last.  Well that, and…

– Making amends with and buying ice cream for anyone I’ve ever been less than completely nice to, which is like… everyone…

– And rolling around on the floor with five Weimaraner puppies while being tickled by a nude Olympic women’s volleyball player and listening to all my favorite Beatles songs in a row, which is like… all of them

– And speed reading that entire list of books that I still haven’t gotten to, including the ones on that one shelf that I pretend to myself that I’ve read, as well as all those goddamn New Yorker back issues that they fire at you weekly as if you’re made of eyeballs…

– And swimming in an ocean and a river and a lake and a pond and a stream and then having a nice sweat in a sauna and doing snow angels and then doing all that again one more time but now in the nude with the volleyball player.

– And throwing a snowball at a monkey.  Which I actually did one time but I’d like to do it again with a larger audience ’cause it was really funny.

See there’s a lot to think about.  And since it’s only one lousy shitty regular 24 hour day (why can’t it be “Live every day like it’s your second to last!  And you live on Venus!  Where the day is 5,832 hours long!”), there isn’t even enough time to make lists of all this shit you wanna do, let alone do any of it.

And it’s not like you can save anything for tomorrow.

God I’m paralyzed with indecision just trying to pick between the eight thousand things I want to do one more time (like eat Count Chocula, throw snowball at monkey) and the eight million things I never did but wish I had. (Like drink a ’45 Bordeaux.  Or a ’46.  Or a fucking ’88 for that matter.)  And since it’s my Last Day On Earth I slept in a little cuz I thought that was justifiable, so now there’s only gonna be time for doing like… eight total things.  But… shit, now that I’ve spent hours hyperventilating about this and wasting time writing about it, now there’s probably only time for, like… seven.  Shit.

Shit!  It’s 4:52!  There’s half the day gone already… unless we’re going by sunset in which case I only have one minute left to seize… Shit!  What do I do!?

Here’s what I’ll do, I’ll tell you this:

DO NOT WHATEVER YOU DO LIVE EVERY DAY LIKE IT’S YOUR LAST, BECAUSE IT WILL TURN YOUR ONE REMAINING DAY INTO A LIVING 24 HOUR NIGHTMARE.

Just live like you know you’re gonna die.  Cuz you totally are.  I personally guarantee it.

That way, you can do whatever the hell you want.

I think I’m gonna have a glass of wine and go to bed.

Monkey + snow = Once In a Lifetime Opportunity

Monkey + snow = Once In a Lifetime Opportunity