Friday, October 28, 2011

Nothing to Lose

I've heard a lot about Steve Jobs' "Stay Hungry, Stay Foolish" commencement speech, particularly the "nothing to lose" sentiment it seems to carry.  Far be it from me to criticize a great man - which is what he was - for how he coped with his own disease, but I have to disagree with him on a few points, and I do want to question where he was coming from.  Particularly due to this part:

"I lived with that diagnosis all day. Later that evening I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and I'm fine now."

That was 2005.   In 2011, Steve Jobs died of pancreatic cancer.  He was not "fine now." 

How would his speech have been different, had he known he was still sick?  A man who has stared down death and survived sees things differently from a man who is still staring down death.  While it sounds like a pretty good idea to live each day as one would their last, it's pithy and unrealistic.  Is there anyone among us who truly lives for the moment?  Anyone who gives no regard to tomorrow, and the off-chance that the sun may rise again?  How many of us look in the mirror each morning and think, "no, this is not how I would spend my final day," simply because we work a full-time job and aren't one of the blessed few who can earn a living doing something we love more than anything else in the world? 

I don't have "nothing to lose."  I have a lot to lose.  Even if I somehow beat this cancer, through the treatments I've endured, the surgery, the radiation, the chemotherapy, my life has been shortened.  Maybe by years, maybe by decades.  Each day that I have left has become a larger portion of my life.  The man who has less feels more acutely each loss, no matter how small.  And sure, were I as wealthy as Jobs I might well quit my job and spend the rest of my days in hedonistic adventure, truly spending each as I would my last.  But I'm not.  I'm doing well enough for myself.  I get by, with some money left over to save for a rainy day.  Now that it's started to pour, I'm glad that I did.  Yet I didn't return to work so quickly after my surgery, and continue to work through my radiation and chemotherapy treatment simply for lack of anything better to do.  I went back to work because I still need to support myself.  If I were to walk out and dedicate the rest of my life to myself, that'd be fun until the money ran out, and then I'd be homeless.

It's not that much different from if I were healthy.  It's just hit me a few decades earlier than usual. 

I know that Jobs was not talking about such logistical details.  He seemed to be advocating risk rather than fiscal irresponsibility.  To that, all I can say is that it's much easier to take a risk when you can afford to fail, and when you have time to rebuild. 

Then again, I've always been really bad at taking risks, and that has held me back from experiencing life. 

"As you grow older, you'll find the only things you regret are the things you didn't do."
- Zachary Scott

Thursday, October 27, 2011

Open-Source Cancer Research

Another TEDTalk for you.

These guys found a molecule that might be the key to identifying cancer as cancer.  Instead of patenting the molecule, they published their findings and mailed samples to 40 other laboratories.

It's this kind of selfless generosity and dedication to the expansion of human knowledge that gives me hope for my future, and for the future of my species. We can't just sit around hoping for a miracle.  If we had more people like these, maybe we wouldn't need miracles anymore.

Update: I contacted my oncologist about this and he said he was unable to find any studies of its effects on gliomas.  Oh well.  Maybe someday.

A peek inside

I'm going to make this one a bit short as the details are still murky, incomplete, and confusing.

Yesterday I had an MRI, the first since July 1st, the day after my surgery.  Between then and now I've undergone thirty radiation treatments concurrent with 45 days of low-dose chemotherapy, as I've described in gripping detail.

The good news is that everything has either stabilized or improved.  The greatest areas of improvement were along the corpus callosum and into my right hemisphere, which were the most delicate areas.  The corpus callosum is a pretty important structure and we'd much rather keep the cancer restricted to a single hemisphere than have to deal with something transaxial.  That's not to say they've completely eliminated the cancer from those regions; that much is impossible to tell.

However the parts that stabilized were the parts that gave us the most concern.  My original MRI showed two areas of enhancement that lead my oncologists to believe my cancer had recently advanced to a grade 3.  I mentioned this in an earlier post, how they took three weeks to do the pathology, to make absolutely sure they didn't find any grade 3 tissue, and how they didn't, but how they obviously could not test the cells that remained in my head.  Well, those are the two little dots that have stabilized.  They haven't grown any, but my oncologist believes they're still cancerous and still alive.  And they are the most aggressive cells.

He didn't use the term "grade 3," and I don't think he would if pressed.  Instead, he said he thinks that part of the tumor was in "transition."  In other words, it's a grade 2 but we caught it in the middle of becoming something more aggressive.  I guess that means it's a "fast" grade 2, or maybe a "slow" grade 3.  A grade 2.5.  Mid-grade cancer?

I'm reluctant to call this bad news because we aren't really sure what it means.  It's good that it doesn't appear to have grown any but we don't know what it's going to do from here.  We don't have a clear answer on how to treat it, or if we should even treat it at all.  There's also a small possibility that what we saw on the MRI was an artifact left over from the radiation treatment; some sort of swelling or scarring.

We have decided on what they call a 5/28 treatment.  I will take chemotherapy at twice my previous dose, for five consecutive days every month.  Every month they'll check my blood and if they see any problems, they'll stop the treatment.  Every other month, I get another MRI to see how things are going.  This isn't an uncommon treatment, it's just not certain what sort of effect it will have on my particular cancer.  It may kill the problem areas.  It may do nothing at all.  It may even cause me harm without any benefit whatsoever.  The current plan is to do this for a full year, depending on how well I tolerate it.  At that point we'll decide whether or not to do it for an additional year, but the drug manufacturer recommends against taking it longer than that.

We have no idea if this is the right thing to do.  My oncologist believes it is, so for the time being I'm going to defer to his expert opinion, while I make a few calls for second opinions (this oncologist is not the one I've been working with since June, after all).  He told me about a patient with GBM4, a highly aggressive form of brain cancer where life expectancy is typically measured in weeks.  He said this patient had been on a 5/28 cycle for six years.  The fact that this patient was able to do anything for that long seems to speak to the treatment's merit.  That said, I do not have GBM4 and a single anecdote is not data.

We're all kind of flying blind here.  All I can do is hope that I tolerate the chemo as well as I did last time, and just keep fighting.

We literally have no other option.  We can't operate again.  They're worried if they try radiation so soon after the last dose it'll cause necrosis, which can be even more dangerous than the cancer itself.  It's chemo or nothing. 

On the plus side, I've been told that despite my lack of 1p/19q deletion, they expect me to respond well to chemotherapy.  There's a certain enzyme responsible for detecting and treating DNA damage, and mine doesn't seem to be working quite right, which I believe means my body isn't going to try to protect the cancer cells from the effects of the chemotherapy.  On the other hand, had this enzyme been working properly, I might never have gotten cancer in the first place.  That means I'm also more susceptible to secondaries.

I guess there isn't much point to pulling punches against the cancer that I have out of fear of a cancer that I don't.  That's what I'm going to tell myself, because I really don't need to start doubting my doctors and my decisions on top of everything else.

Tuesday, October 25, 2011


I am a hypochondriac's worst nightmare.

The symptoms of brain cancer are many and vary depending on the location of the tumor.  Most of them are very mild, and few of them uniquely characteristic.  Severe headaches and seizures tend to be the big ones.  I, with my 8cm frontal lobe tumor, had only occasional mild headaches.  I have never had a seizure, and my doctors are so confident that my risk is so low they haven't even prescribed anti-seizure medications.

The symptoms that finally brought me to a doctor were all visual.  Remember, the frontal lobe is located (understandably) at the front of the brain.  The occipital lobe, which controls visual functions, is at the back.  My cancer had not reached the occipital lobe, but it had applied so much pressure on that part of my brain (along with my right temporal) that it could no longer function properly.  Even then, when I went in for my MRI we were looking for an intrusive blood vessel near the optic nerves.  No one had any suspicion of cancer until we saw the results of the MRI.  Even then, those symptoms only emerged within the last six months or so.  My doctors believe I have had this cancer for longer than 15 years, with only subtle symptoms that no one would ever attribute to cancer.

In other words, you can be a young man with low risk of any cancer, very little family history of it, yet still have a tumor the size of a lemon buried in your brain, of which you are completely unaware. 

I'd like to recommend that everyone get a cranial MRI at some point during their teen or young adult years but there'd be little point to it.  The cancer starts out microscopic, or could form later, and the vast majority of people will show up clean for their entire lives.  Add to that the cost of an MRI - especially if you can't justify it to your insurance company - and it quickly becomes impractical, even for a hypochondriac.

So let's look at some of my symptoms and see if we can't get some of you to a neurologist.

My parents tell me that my personality shifted dramatically when I was five years old.  I became very serious.  This is our first indication that something might be wrong.  Then again, maybe it wasn't.  I was five years old, and we had just moved for the second time in my life.  My personality was hardly set in stone.  My parents took me to see a therapist when I was about seven years old.  That worked out for three sessions, after which I found out he'd been telling my parents everything, and my parents wanted to inform me how wrong I was.  I never trusted him again, and from that point forward I had trouble opening up to anyone. 

My teenage years were very difficult.  A darkness settled over me, and its tendrils dug deep.  I hated myself.  I thought I was ugly, and inadequate, and that anyone who might possibly like me was either wrong or deceived by the mask I wore.  I became suicidal, and while I never made an attempt on my own life I thought about it on a daily basis.  But I didn't want to kill myself.  I wanted to die.  Back then I was an agnostic as well, fairly certain that there wasn't a God but still allowing for the possibility, as I do today.  I felt that in the small chance I was wrong, in that infinitesimally unlikely case that there might be an afterlife, it would be really hard to justify killing myself.  Or worse, if I had no guarantee there was no afterlife, I had no guarantee that suicide wouldn't send me to my own private hell: living that same life I had tried to escape but with no way out at all.  After I graduated from high school I started to see another therapist.  It took me a very long time to trust him, and there are still somethings, after ten years, that I want to tell him but haven't.  He did write me a prescription for wellbutrin, which helped drive away those dark thoughts.  All the while I thought that some day I would get off the drugs.  Some day I would figure out what was causing my despair and resolve that, so that I wasn't depressed anymore.  Little did I know that it may have been the cancer all along.  Not the sort of thing one can fix with soul-searching conversation or psychological exercises.

I think those days contemplating death have helped me to accept my sickness.  I'm not as afraid of the abyss as I might otherwise be. 

However I'm still not sure that the depression was the cancer's fault.  At least, not entirely.  I think it may have simply made me more vulnerable.

My brother left home as soon as he turned 18.  I still lived with my parents whenever I was home from college until I graduated, found a job close to home, and continued to work there until I was 24 and bought my own place.  I haven't discussed this with my brother and do not thing he would care to.  I have discussed it with my current therapist, one I started seeing as I began my radiation and chemotherapy treatment.

For some reason, I have allowed myself to trust her.  Maybe this whole process has made me feel more vulnerable, or maybe in light of my current situation, it seems silly to care about having my inner-most secrets spilled out for all the world to see.  She is aware of my trouble with previous therapists, and so far has done nothing to shake my trust in her.  On the contrary, she has shown me that she is dedicated to that trust.

And so she and I have dug deeper, and uncovered some scars I didn't know I had.  Some resentment, some fear, and a whole lot of anger, relating to my family life.  Unrelated to the cancer and still some tender nerves, so I don't think I'll go too deeply into detail on this blog.  Suffice it to say that while my parents have been wonderful providing me with material support, there are some old and sturdy emotional barriers to overcome.  Weights I've been carrying so long I have forgotten I had them.  Worse, I have forgotten how to put them down, and now they are keeping me from truly feeling the weight of my cancer.  I am not in denial.  I know that I am very sick.  I still view myself as a character in a book or a movie, one whom I would like to succeed but in whom I have little investment.

It's a cliche to blame one's parents and bottle up their emotions but there you have it.

I've covered my more recent symptoms already, the visual anomalies, the optical migraines, the blind spots, the pressure in the ear, the dizziness, the headaches.  All of those are recent.  In the past, all I would experience would be the occasional shadowed circle in my field of vision, but only faintly and only when I was very tired.  I blamed my strabismus for those.  After all, why shouldn't there be pressure in my eyes?  I'd had surgery on them.  There had to have been some scarring.  Certainly I had no reason to suspect it was my brain swelling.

I had a few other symptoms that were a little more unusual, but still minor enough that they didn't overly concern me, or otherwise seemed mere quirks.  However I justified them to myself, I never suspected they were part of a disease.  Some of them may indeed be totally unrelated.

For much of my life I've had a small facial tick, like an itch in my nose that I try to scratch by sniffing.  I'd have the occasional minor spasm, like my leg jerking once while I was in bed (which I believed to be RLS), or a small muscle repeatedly contracting and relaxing outside of my control.  My fingers would tremble if I tried to stretch them all out and curl my ring finger.  From time to time I would lose nearly all hearing in one ear, save for a single, loud, constant tone, which would usually fade after a few seconds, after which my hearing would return.  A few times the tone grew quieter but remained, permanently, as tinnitus.  In retrospect, that may have been nerve damage or death due to cranial pressure.  It did become more common and intense over the last several years.

I also have a problem with clutter.  In what may be the clearest indication of something malfunctioning, my living areas would usually fill with "stuff."  Items, trash, generic clutter.  I saw that Hoarders show and wondered if maybe that was my problem, though my case never grew quite that severe.  Some of the key symptoms were missing.  I felt no real attachment to the stuff I had.  I was reluctant to throw out papers without looking them over, not because I thought they might be important, but because my parents had ingrained in me a deep fear of identity theft.  As my father helped me clean up my condo in the wake of my surgery, he pointed out something I never really noticed before.  My clutter was extremely organized.  Sure everything was in a pile, but the piles were reasonable, and useful.  All of my mail in one place.  All of my CDs in another.  All of the leftover plastic grocery bags together in the corner.  It wasn't a matter of sheer sloth or chaos.  Instead, I was missing that part of most functioning adults that tells them when enough is enough, and they really ought to get rid of that pile.  I know that it looks quite a lot like sloth.  I, myself, always just assumed I was lazy.  I had no reason not to.

Most of my life with this cancer, and still the symptoms are so subtle that even in retrospect I can't attribute anything directly to the disease.

Try not to think about that too hard the next time you need a tylenol.

Monday, October 24, 2011


When I was in high school, we had a guest speaker once.  She spoke of her life in Poland during the Nazi invasion, how she was captured and repeatedly escaped.  Incredible stuff.  Afterwards I spoke to her, and I told her how I can't imagine how she could find that kind of strength.  What she then said to me has always stuck with me.  She said she thought my life was far more difficult.  Even though her life was constantly on the line, she always knew exactly what she had to do, whereas I was drowning in possibilities, choices and confusion.  She knew she had made the right choice if she got to see the dawn of another day.  I might never know.

I remember this every time someone tells me how brave I'm being, or how strong I am.  I'm not brave, or strong.  I only have one path I can take.  I know I've made the right choice as long as I'm still alive.  There's just a bit more of a delay between my actions and their consequences.  So I follow my path, not out of bravery or strength but out of necessity, because my alternative is to give up and die.  I do not consider that an alternative.  If I have shown one admirable trait during this ordeal, it is my endurance.  Even then, were I unable to continue to drag myself down that path, I have people around me who would drag me along anyway.

It wasn't long before I first noticed the side effects of my combination radiation/chemotherapy.  I felt exhausted from the chemo almost immediately, but promised myself I would work as much as possible: I had a mortgage to pay, and credit card bills, electrical bills, water bills, medical bills, association fees, and oddly enough none of those companies seemed willing to give me some time off without substantial late fees.  It's hard to describe the fatigue that comes with chemotherapy.  Even at my low dose, it was a mix of a physical weakness along with a general sleepiness.  The radiation only added to that, as it's known to be extremely tiring.  It kills brain cells, after all.

Add to that the sheer distances involved.  You see, the hospital where I received the treatment was not in the city but it was still 45 minutes away.  I had to leave work two hours early, drive 20 minutes to meet up with my parents, ride in their car for 45 minutes, and then go under the gamma-knife for all of 15.  Afterwards another 45 minutes back to our meeting spot, and then the real killer, a little over an hour driving myself home.  I kept a change of clothes and a dose of my medications at my parents' place, in case there ever came a day I couldn't make it.  Though a few days were close calls, I always managed to make it home.

The first day of radiation therapy I felt a slight sensitivity on my scalp whenever I moved it.  This would normally go away after about an hour, though over time it would come to last longer and hurt more.  It was, after all, a radiation burn.

About two weeks in, both of my parents - who work full-time - were too busy to take me.  I mentioned in casual conversation that I'd need to drive myself and the aforementioned Jill immediately offered to drive.  I tried to explain to her just how much she was offering, in case she didn't understand the distances and time commitment involved.  Still she insisted, and Jack came along too.  In retrospect, it was a bad idea for me to call them Jack and Jill, since the referenced characters were siblings and these two were to be married in late September.

It just so happened that we hit the worst traffic I'd ever seen that day.  That twenty minute drive I mentioned before took us over an hour.  We called back to work to have the receptionist check the traffic report, only to discover that she barely understood what a mouse is for.  I had to call ahead to the treatment center several times to make sure they wouldn't close without treating me, and we cut it very close.  People were leaving when we arrived.  Jack had assured me that even if the place was closed when we got there he'd break in and we could figure out the machine on our own.  While I'm fairly sure he was joking, I do not doubt that he would have gotten me my treatment that night, no matter how many calls we had to make or how far he had to drive.

The two of them even took me to dinner on the way home.  They refused to let me pay, even though I'd cost them time, fuel and frustration.  At no point did they seem like they'd regretted helping me in the slightest.  These two were - and are - two of the best people I've ever had the pleasure to know.  I only hope that I can return the favor some day. 

That night, working at my computer in the comfort of my home, I felt a small itch along my hairline, above my left eyebrow.  I scratched only lightly, but when I drew my hand back I found that the tip of my finger was completely covered in hair.  I stood in front of the mirror, gently teasing away the hair that came loose.  "As if it were stuck in butter," is the metaphor I've heard.  Quite apt.  I lost only a small patch at the time, bridging the gap between my hairline and my scar.  It was subtle enough that I didn't bother to cover my head, and no one even noticed.

Of course, I lost more hair than that.  It spread along the underside of the scar until I'd lost nearly all of that hair.  I looked like I had a dramatically receding hairline then, but still nothing I felt the need to cover.  Then it began to spread above the scar, toward the center at first, then spreading to the left.

My doctor had advised me to keep it covered after I started losing hair, not for matters of vanity or style, but because of the radiation burns.  They had been getting worse, though still weren't enough of a problem for me to treat with the moisturizer, anti-bacterial cream or steroidal cream they'd given me.  I refused to wear a handkerchief.  To me, that says, "I have cancer" even more than wearing nothing at all.  Instead I dug up an old wide-brimmed fedora, more of a cowboy hat really, that I'd worn from time to time in high school.  It fit me well - unusual due to my big head - and was quality enough to look like an actual hat rather than a piece of a costume.  However the hat was warm, and I couldn't really wear it in my car.  I had a du rag that I tried, and it worked well but didn't really fit me right.  It stuck up in the middle, and I felt awkward wearing it.  The hat did fit over it, but if that were enough to solve the problem I could have simply worn the hat.

I ended up going with a bandana from the guys at Sparkling Earth.  Or maybe it's a skull cap.  I don't know what they call things.  Anyway, they have a huge selection of patterns but as I was looking for something a little more subtle than flaming skulls, I went with plain black.  It's actually a pretty neat little garment.  It has a band of terry cloth in the front for catching sweat, fits nicely on my head, and seems to be pretty high quality.  Best of all, people have asked me if I'm a biker, or about the "pirate" look, but so far it doesn't seem to shout "cancer" the way a handkerchief would. 

People said that they understood why I wanted to keep my head covered, but I don't think they really did.  It wasn't about privacy, or shame.  It was because my hair looked so awful, there is no way any of them could have looked at it without being reminded of my disease.  I had lost most of my hair on the front-left of my head, including my sideburn.  On the right side I suffered an "exit wound," losing even more hair, including that sideburn.  What I had left - what I still have left - was complete baldness on the front of my head, save two thin patches branching down on the right side.  Thankfully my eyebrows and eyelashes were spared.  My head was irritated from the radiation burn, which no longer looked like a simple patch of red.  Instead it formed a grid that mirrored the mask I wore during treatment, as though its form had been branded into my skin.  By then, I was using the anti-bacterial and steroidal creams they'd given me.  I had developed a mild case of radiation-induced dermatitis (burn pimples!). 

In the following weeks the redness faded, and the dermatitis recovered.  My hair has not.  They say it can take three or four months before the follicles become active again.  Even then, they don't know how much will grow back, or if it'll be any different than the rest of my hair; I've heard the texture and even color sometimes changes a little.  And it sucks.  It really sucks.  I'd had long hair since I was 14.  Still, I take comfort in knowing that this had to happen.  I did not have a real choice.  I had to have radiation therapy, and my hair had to fall out because of it.  All I had to do was endure it.

My mental state was another case.  My body had slowly adjusted to the radiation and chemo and I found myself less tired around the middle of my treatment, but things started getting harder again near the end; both therapies have a cumulative effect.  In addition to the fatigue, I had trouble focusing.  My memory seemed to get worse, though whether that was a result of the treatment or my growing familiarity with my post-operative self is unclear.  Likely it was a bit of both.  I also started to suffer from some of the same symptoms I had before my surgery.  That much made sense; they were caused by swelling rather than direct infiltration by the cancer, and radiation also causes swelling.  I had fallen behind on my work, but I was still working as best I could.  My co-workers and boss have shown me a great deal of patience, and for that I am grateful.

Most of those symptoms cleared up within a few weeks.  I'm still a little shaky on my memory but it's easier to focus now, and most of the symptoms that recurred have since faded, as others (such as my blind spots) have continued to heal.  So the least I can say is that even though it's rough, it will get better.  At least, most of it.

They say that in retrospect, these sorts of ordeals seem to have just flown by.  That is not the case for my radiation treatment.  I remember being acutely aware of how many sessions I had left, each and every day.  When I reached the mid-point I didn't feel like it was all downhill from there, or that I'd already proven I could do 15 days and just needed to do another 15.  I felt like I could not believe I was only half way through.

But I did endure, and I did get all thirty of my treatments as scheduled, without missing a single day of work.  On Wednesday, I'll get my first MRI since right after my surgery.  That should give me some idea on whether or not I took the right path.

Friday, October 21, 2011

Microwave Cooking

Everyone did their best to make the experience as pleasant as possible.  The receptionists always seemed happy to see me.  The nurses and technicians were friendly and helpful. The specialists were knowledgeable and skilled.  I still go back every other week to see their social worker and therapist, as she helps me sort through the recent changes in my life, and the old wounds it has brought to light.  The radiation oncologist had an honest and casual way about him that really clicked with me.  Even the waiting room was beautiful, with a huge fish tank containing a variety of exotic salt-water fish, including several predators (I'm guessing everyone was too big to be appetizing, though the eel did take a chunk out of the lionfish's tail).  None of that changed what I had to endure.

First they did a CT scan, which they aligned with MRI images from before and after my surgery, to get an accurate current picture of my brain and the disease within.  They molded a sheet of perforated plastic over my head and shoulders, so tight it pressed against my eyelids, and held my lips nearly still.  This mask would become my companion for the next six weeks and I would grow to hate it, even though it did me good.  The idea was to hold my head perfectly still; they would be firing photons at my brain and none of us wanted them to miss.  They stuck me with a pen-like needle, slightly off-center on my chest, on my forehead behind my hair line, and on either temple.  The tiny blue dots left behind are in every way and by every definition, tattoos.  I still have them now, and will have them for the rest of my life. 

The room to which they lead me was marked with radiation warning signs.  A pair of lights, one red and one green, sat above a thick vault door.  A bank of computers lined up along a window to view inside.  Within the room was a huge machine, a narrow black plank before it, a cradle nearest to the machine.  I laid upon that bed, and set my head upon the cradle.  The bed rose, and shifted back, closer to the machine, as they shut out the lights.  Red lines of laserlight emerging from the ceiling and walls streaked my face.  These they aligned with my new tattoos.  Then came the mask.  They would settle it over my face, often asking me to tilt my chin up, or down, or move up slightly.  Then they would clamp it down tight, so tight I could feel my pulse in my face, and that it would leave a grid-like mark behind that would take a few minutes to fade.  They placed a cushion under my knees, and handed me a foam ring on which I could hook my hands and relax my arms.   

To say it was like getting an X-ray would be an understatement.  The machine and bed would rotate, and instead of the one or two quick shots of an X-ray, I received five, 10-second blasts, accompanied by a loud buzzing sound.  They called each blast a "field."  I kept my eyes closed most of the time - it was hard to open them - and during each field I saw a blur of bright violet light, as if someone was shining something in my eyes.  I would also smell an intense, unpleasant odor, like a cross between chlorine and metal.

I immediately knew there wasn't really a smell.  It took me about seven treatments before I realized the light wasn't real either.  They told me it wasn't that uncommon, for patients to hallucinate during treatment.  My olfactory and optical nerves were being directly stimulated by the radiation.  In time, the smell would fade and I didn't much mind the light.  Oddly enough, I found I could prevent the smell by holding my breath.  Since there was nothing to actually smell in the first place, I can only conclude that my mind's assumptions overrode the stimulation: I cannot smell while holding my breath, therefore I was not smelling anything no matter what my nerves signaled.  Holding my breath was far from an ideal solution, as the mask was so tight on my nose I had trouble breathing, and after they took it off it my nose was so tender I felt as though I'd been slugged.  Eventually they cut the nose out for me.  The masks's nose.  Not mine.

The treatments lasted about fifteen minutes each, from mask on to mask off.  The technician told me if I ever needed to stop I could just raise my hand and she'd be there in two minutes.  That's how long it took to get the door open. 

The radiation machine is surprisingly sensitive.  Looking up at it, it looked like a pane of glass with striations of metal within, which could open and close and usually formed a sort of crescent shape.  These arms would vibrate during a field, and I was told that if they couldn't vibrate quickly enough, or if there was any sort of power variance, the field would end immediately.  Another safety precaution.

I find it fascinating how radiation treatment actually works.  I'm going to go a bit sciency here and this is all off the top of my head and from my best understanding, so forgive me if I mess up any details.

Healthy, normal cells are actually highly resistant to radiation.  It takes quite a lot to cause any real damage.  The problem is cell reproduction.  During mitosis, the DNA lacks its usual protection and is susceptible to radiation damage.  Now, because cancer cells reproduce much more often than healthy cells, they are in this vulnerable state more often.  They are also often less "stable" than healthy cells.  While radiation can (and does) damage healthy tissue, it damages diseased tissue much more easily and often.

From what I understand, the radiation itself attacks the DNA strand both directly and indirectly.  The photon's wavelength matches the width of DNA, making it easier to strike directly.  They also interact with the water molecules surrounding the DNA to create a burst of free radicals, which can also damage the DNA.  That means that during radiation treatment, drinking things that are high in anti-oxidants can actually be detrimental. 

So the idea is to damage the DNA so that the cell can no longer divide.  Sometimes this takes a few generations as DNA damage adds up.  They irradiate everything within 2cm of known cancer tissue, in an attempt to kill any remaining cancer cells that were inoperable or invisible, as they tend to roam away from the primary tumor.  My total dose was 5,400 sieverts (I believe that's the unit of measure they use), over 30 treatments.  My doctor said that they usually give between 4,500 Sv and 5,400 Sv, finding that any less than that was ineffectual and any more than that caused too much damage to healthy tissue.  The internet says a typical treatment is 45-54 Gy (gray).  I don't know if one grays equals 100 sieverts, or if I just searched for radiation therapy terms and thought that "sievert" sounded like the word he said.  My doctor told me most people just call them "rads," but that that's not really accurate.

The big question is, if this can damage cancerous DNA then can't it also damage healthy DNA?  It can.  It can even create new cancers (called secondaries), or accelerate existing ones.  Even when it doesn't, there are other side effects I'll describe next time.  It's all about risk versus reward. 

Until my MRI on the 26th, I won't have much of an idea which won out in my case.

Thursday, October 20, 2011

I am not a plot element

Before I begin, let me say that yes, I'm going somewhere with this, and no, I haven't seen 50/50 but I hear it's pretty good and based on the director's personal experience with cancer.

The media has done a tremendous disservice to cancer patients.  I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah.  I specifically mean entertainment.

In movies, there are four kinds of cancer patients.

1) Part of the background in hospitals, their only function to fill a bed.  Maybe that bed will be empty later if the director feels like being subtle and poignant.

2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.

3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.

4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."

Needless to say, number 4 there strikes a particular chord with me.  Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything.  There's a pun in there but I'm not in the mood.  Haven't had my coffee.  ...Dammit.

Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity.  Other than that they're all delusions and screaming in pain.  And let's be clear, there are people who end up like that.  This is a disease that consumes the brain.  But it typically doesn't happen nearly so fast.

Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death.  From what I've seen and heard, most brain cancers are discovered by accident.  Think about that for a moment.  That means that the cancer had so little impact that the patient didn't even realize they were sick.  And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming.  But I picked myself up again.  In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later.  So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms.  Or I might not.  I'm not doing that right now.  Right now, I'm living on my own, I'm working full time, and I'm continuing my life.

A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy.  As I mentioned before, I was very reluctant to go with chemo.  That's because I was terrified of it, as are most people.  In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer.  They lose all their hair, all their color, and all their weight until they look like little more than a skeleton.  They lack the strength to stand, or speak, or even hold up their head.  They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.

And don't get me wrong, there are people who must endure exactly that.  I've come across a few, in the same hospital, seeing the same doctors.  My heart truly goes out to those people, and I can't imagine trying to live like that.  I can't imagine that they can.  However, that's only the most extreme form of chemotherapy.  There are much lower doses.  Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy.  More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects.  I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran.  I didn't get the slightest bit nauseous.  The worst I suffered from that was a little stomach pain now and then.  I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment. 

That's not to say that taking chemotherapy - even a low dose - isn't scary.  The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling.  The bottles came in a bag marked with a huge biohazard symbol.  The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin.  And I had to swallow them.

There are also plenty of risks and restrictions while taking chemotherapy.  It attacks all replicating cells in the body, including healthy ones.  Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor.  Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia.  It saturates the body.  I could smell it in my sweat.  Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo.  It isn't always as bad as it is in movies, but make no mistake.  It is poison.  Its purpose is to attack the body.  I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way.  If only we could find it.

Of course, I wasn't the only person mislead about chemotherapy.  My image was a common one.  So common, in fact, that most people seem to equate cancer with severe chemotherapy.  People kept telling me how good my color was, and how healthy I seemed.  They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason).  They think that since I look healthy, I must be healthy.

Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer.  I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.

So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.

If only I could say the same about the radiation.

Wednesday, October 19, 2011


Throughout this whole ordeal, my parents have given me a great deal of logistical support.  They've handled the financial side of it, and the scheduling.  My job has been to tolerate the treatments and try to get better.  For that, I will always be grateful. 

But let me tell you something about my mother.  She complains that the people around her - her friends, her family, her co-workers - don't understand what something is like unless they are going through it themselves.  She told me long stories of how she has to endure people asking stupid questions or making stupid offers.  One of her favorite things to say was, "they all offer to help in any way they can but once I tell them how they can help that's not what they want to do."  If she was in the same room as me, she was usually going on about the latest offense or hardship at the hands of oblivious well-wishers. 

It didn't seem to occur to her that I might have other things on my mind.  Perhaps even my own problems.  She didn't have the slightest idea what it was like having brain cancer (though to be fair, I haven't the slightest idea what it's like to have a son with brain cancer).  After about a week of recovery she was used to the idea and I was doing well, so she started acting like I was just fine.  Occasionally I'd catch a brief glimpse of her usual self, of dismissing my concerns and troubles until she remembered, oh yeah, maybe my concerns and troubles are really freaking legitimate right now.  By week three, I was basically a teenager again, in her eyes: expected to care for myself - which I could - but devoid of any of the wisdom or experience that allows me to make informed decisions.  I started to remember why I'd moved out. 

Starting at the time I was diagnosed, my father tried to give me some degree of agency, in that he at least asked for my go-ahead on all important (and unimportant) decisions relating to my own care.  That was a valuable thing; cancer has a way of making one feel helpless and out of control.  The thing is, neither he nor my mother really respected my decisions unless they were "correct."  If I made the wrong call, they would ask the question again.  And again, and again, until I made the "right" decision.  Sometimes over silly things (while in the hospital I told my mother thrice that no, I would not like a blanket, only to catch her trying to sneak one on me while she thought I was asleep).  Sometimes over more serious things, like if I wanted to go back on steroids or not (I did not, which was apparently incorrect).  They would ask until I got angry.  Then they would ask why I was so "grumpy." 

Grumpy, as if my emotions were the result of some irrational mood, like I was a baby who had missed his nap, and that I would clearly see the wisdom in their decisions if they asked later when I was feeling better. 

To those of you providing care for a cancer patient, I would suggest this: if there is a decision to be made, ask the patient.  If the patient gives you an answer, respect it.  If you piss off the patient by not respecting it, do not dismiss their legitimate anger.  Otherwise, you have not given them agency.  Rather you have taken it away and belittled them for ever thinking they had it in the first place. 

As far as actual treatments went, there was not much to do during those first weeks of recovery.  If I had any new or sudden symptoms we had to report them but otherwise, we were waiting.  We were told the pathology - a dissection of the tumor and analysis of its cells - would take about two weeks.  Until that was complete, we wouldn't know what I had other than a "glioma."  Based on the MRI of my tumor, the oncologists we'd seen all believed it was a Grade 2 though they saw signs that it might be becoming a Grade 3 (not to be confused with "Stage 2" and "Stage 3").  Grade 2 is known as "low grade."  Grades 3 and 4, "high grade."  In a low grade brain cancer, life expectancy is measured in years.  In a high grade, months.  A cancer is graded by the fastest growing cells, so there is no such thing as a cancer that is "mostly Grade 2."

We were told that mine was "mostly Grade 2."  A little after two weeks, after they'd delayed the diagnosis by a few days to make absolutely sure it was correct, my father spoke to Dr. Administrator, who said there was no reason to believe I wouldn't live "a long life."  My mother wanted it in writing, as if that would somehow make a difference, or be defensible if it turned out she was wrong.  A few days later, Dr. Administrator told my mother that my cancer was "mostly Grade 2."  That means, "Grade 3."  I don't know how the actual conversation went and would like to think Dr. Administrator meant, "what we have analyzed so far is Grade 2 and we've analyzed most of the tumor."  I have no idea.

They completed the pathology the next day and faxed us the results.  My father said it didn't contain any useful information or even a diagnosis, but it absolutely did.  It was simply worded as a medical document rather than a, "Dear Patient" letter.  It left me confused, as it determined I had two kinds of cancer (oligodendrocytoma and astrocytoma), but both were marked "level 2."  I didn't know exactly what that meant but assumed it couldn't have meant Grade 2, as we'd been told it wasn't entirely Grade 2. 

Except it was.  The day after that we went to the city to speak with the oncologist and he explained the results to us.  My cancer was primarily an astrocytoma but did contain some oligodendrocytoma cells, hence the term, "oligo-astrocytoma," and that they had found nothing but Grade 2 cells.  Wonderful news (the oncologist looked at my mother a bit funny when she showed relief), but I concluded that Dr. Administrator really shouldn't have said anything.  I think my mother is partially to blame for pushing her, though, and it's entirely possible she misinterpreted what was actually said. 

When the two-week deadline came and went, my mother was livid.  She wondered how they could do this, why they were dragging their feet, and insisted my father call every day to demand the results.  Even after I explained to her that they were being very careful, making absolutely sure they didn't miss anything, it still wasn't good enough.  She would have preferred the wrong answer, so long as she didn't have to wait any longer. 

As Dr. Administrator had said, it wasn't for our convenience.  It was brain surgery. 

I tried not to think about the fact that they'd left some cancer cells in my brain.  Those, they couldn't analyze.  Some of them were some of the youngest, newest cells in the mass.  Some of them could have been - could still be - Grade 3. 

I had a number of treatment options available.  The first was to do nothing.  My oncologist - let's call him Dr. Cancer - recommended against that one and I agreed with his assessment, but it was very reassuring to know that it would not have been medically irresponsible merely to keep an eye on things.  What Dr. Cancer recommended was, due to the location and transaxial nature of the cancer as well as my young age, we treat it like GBM4.  That's a Grade 4 cancer, and possibly the most serious.  Life expectancy is measured in weeks, so they throw everything they've got at it.  That meant radiation therapy and chemotherapy.

Chemo tends not to be all that effective against astrocytoma, which lacks 1p/19q deletion, and I assume that makes a brain cancer more susceptible to the treatment.  Therefore he recommended a low dose of chemo, 165mg daily, taken orally.  Not to treat the cancer directly, he said, but because there was some evidence that even a small amount could boost the effectiveness of the radiation treatment.  He stressed that there was not enough data on the method to make it an accepted treatment, and rather it was closer to a clinical trial, but he felt confident that it would yield positive results with only a small risk.  One of the potential side-effects of chemotherapy is leukemia, though he reassured me that it was extremely rare and only associated with higher doses over much longer periods.  I told him I would definitely go for the radiation but would need some time to think about the chemotherapy.  It's a very scary word, after all.  The next day we phoned him and let him know that I would take his full recommendation, both the radiation and the chemotherapy. 

We would start on August 8th.

Tuesday, October 18, 2011

Survey Results

I'd like to take a step away from my little memoir for a moment as I have something more current for you today.  I promise that tomorrow we'll return to the epic adventures of a 29-year-old man living with his parents. 

Today I received the results of the investigation I mentioned, the one they initiated in response to my survey about my hospital stay. Let's take it point by point.

First of all, they note that their staff does try to monitor visitors while respecting each patient's desire and ability to receive guests.  That doesn't really tell me much, other than that they knew what was going on and didn't act upon it.  I suppose that's reasonable enough, given the circumstances.  It's kind of cruel to tell a cancer patient they can't see their family or friends, even if that is a detriment to their roommate.  Would have been nice to know their official policy on it, though.  What does it mean to "monitor" something?  They could have "monitored" someone trying to smother me with a pillow; doesn't really make a difference unless they take action on it.

They also informed me that they weren't required to give me a private room, which I know, and I understand that too.  It seems to be more of a legal argument than a patient care one: you have no legal right to a private room so you have no recourse if we don't give you one.  They go on to note that I could have paid extra to ensure a private room.  Maybe they don't want to spoil us greedy patients with free privacy. 

They note that they try to pair patients by gender and care needs, which makes sense to me as I was paired with another young man with cancer, who needed observation and some occasional routine care, same as I.  I'm guessing that particular policy went out the window after they started moving me, as Mr. Liver was actively dying and I don't think I was doing quite that bad.  I also don't think my medical needs (or gender) are similar to those of an old lady who wants ice cream.

Next a bit about the night nurse, the one who had me drink my own spit.  He's sorry about that, and should have brought a filled cup from outside the room.  They also inform me that when I was having trouble sleeping, he contacted my physician to get permission to give me a sleeping pill, but when he returned to my room he found me asleep and decided not to wake me.

I find that fascinating for two reasons. 

1) When I'm trying to sleep, not even my own parents can tell that I'm not actually asleep.  Furthermore every time a nurse entered my room to administer care I was awake and aware of them as soon as they entered the room.

2) That man must have a remarkable memory, or take very good notes. 

No sleeping aid appeared on my invoice either, which was specific enough to include the exact date and cost of each individual treatment I received - from pills to blood glucose tests - though perhaps it wasn't listed because I never actually received the pill.  Or maybe because that nurse is full of shit. 

For my remaining complaints, the noise levels, my perpetually open door and the delay in response to my call bell... Sorry.  They apologize for it, they regret it happened, but it doesn't look like they'll be doing a damn thing about it.  They didn't even mention the alarms.  Maybe they're worried if they admitted to that it would be actionable or something.  That sort of thing could cause a patient serious harm, after all.

In conclusion they wish me a delightful autumn, which is nice.

Even if they aren't taking any real action, at least I was heard.  Someone read the thing and took it seriously enough to respond to it.  It's a start.  If you disagree, don't tell me.  I'm looking for a silver lining here.

Monday, October 17, 2011


I never really intended to live so close to my parents.  It happened naturally, as a result of consequences and work.  After I graduated from university I moved back home so I could accumulate some savings, with which I could put a nice down payment on my own place.  They charged me some rent but it was nothing outrageous; less than I now pay in association fees on a monthly basis.  Once I had saved enough to purchase a condo I found one that was affordable and very close to my job (about 10 minutes away), and nice enough to be called an investment.  That put me about 40 minutes away from my parents, which is one of the reasons they were able to provide logistical support through this ordeal. 

Once we had a date for the surgery, we worked out a plan for my recovery.  We agreed that it would probably be best that I not be on my own for a while, and even though things turned out much better than expected, I was not quite out of the danger zone yet.  My father is an EMT with the local fire department, which meant he knew the procedure for caring for a patient such as myself or responding to an emergency.

I had to keep to a tight schedule at first.  A handful of pills, to be taken at four points during the day, though later that would become three, then two, and now only one as I was slowly weaned off my medications.  Decadron (steroids) for the swelling (which, I must admit, gave me much more energy than I was used to).  Bactrin (antibiotic) to strengthen my immune system, which suffered due to the steroids.  Zofran, for the nausea (due to steroids and the whole "brain surgery" thing).  Two different flavors of stool softeners, as they didn't want me straining at anything; the floor of the resection was susceptible to hemorrhage early on (and I swear I'd never been so regular in my life).  Wellbutrin for my depression, which I'd been taking for years and we decided that maybe we ought to wait a while before tweaking any long-term meds.  Levothyroxin for my thyroid.  I also had plenty of Tylenol on hand but never needed it.

The nights were difficult at first.  I was keeping more regular hours than I ever had in my life - my therapist said I've been borderline sleep deprived for years - so waking up around 8 or 9 AM and actually feeling refreshed was new to me.  I still woke up frequently during the night, mostly to go to the bathroom as I was required to keep my fluid intake as high as possible.  My body had trouble regulating its temperature.  I kept the AC turned on but sometimes I would start to feel remarkably cold, and cover up with a blanket.  Then I'd wake up an hour or two later, drenched in sweat.  Over time, the variations became less severe and eventually vanished entirely.

It was kind of nice, staying with my parents.  My meals were prepared for me, and my only job was to relax and heal.  I had to take things extremely slow, of course.  When standing I needed to brace myself with my hands until I was sure I had my balance.  I was still too weak and unstable to move very quickly, but still had to exercise for fear of clotting.  I still couldn't bend over, or put any sort of pressure on my head.  There was a whole list of foods I couldn't eat. 

I also found that I liked mushrooms.  I was never really all that fond of them, possibly due to a bad mushroom experience as a child, but I tried a few on a whim and took a liking to them.  I'm inclined to believe that was more a matter of me giving them a shot than having lost my dislike of mushrooms through surgical intervention.  I would not recommend any parent try brain surgery as a way to get their child to eat their veggies.

Before long I started to cook for myself again, in part to make sure I still knew how and in part because my mother had other things she'd rather be doing.  I needed help showering at first because I couldn't get my suture wet, but they had a bench for me so I didn't have to stand, I handled everything else myself and gradually I worked up to showering alone, standing.  My first post-surgical shave felt like being reborn; I used to have a goatie but had long gone clean shaven due to the itchiness of a beard, paired with a related bout of facial trichotillomania

Over time I started to regain my strength, even as I stopped taking the steroids.  My gait became stronger and steadier, and finally returned to normal.  That chronic cough I had started to fade.  Many of my visual symptoms continued to improve, though it was clear that my brain was still rewiring itself, occasionally leading to a new (albeit brief) symptom, such as a numbness on the top of my right wrist, or on the lower tips of the two last fingers on my left hand.  I still had to watch for dizziness and it seemed all the progress from my recent eye exercises had been undone as I was again seeing double, though this too is a common symptom of brain surgery, and improved gradually.  About a week after my surgery I played a game of Left 4 Dead 2 and quickly determined I was not ready for something quite that intense. 

During that first week I started to communicate more, sending out updates to friends and family, asking about the outside world.  I didn't stress over work, or much of anything, really.  It was actually quite relaxing, and not a bad vacation. 

Might have been nicer without the whole brain cancer thing, but these days I take what I can get.

Friday, October 14, 2011

The Decompiculture Society

I saw an interesting talk over on TED about an alternative burial method.  Pioneered by Jae Rhim Lee, the technique uses specially bred mushrooms to speed decomposition and sequester all those lovely toxic chemicals we humans contain.  It seems like she's using mushrooms that are traditionally edible, which you'd think would make it a bad choice, but I figure if someone walks around eating random mushrooms they find on the ground they're kind of asking for it.

Her group is called the Decompiculture Society.  Now I don't mean to be morbid, but my plans to be an organ donor don't exactly appear viable any longer, and the Decompiculture Society also seems to have a focus on accepting the inevitability of death.  I think that could be pretty helpful for just about anyone. 

Also they call members "decompinauts," which is kind of cool.


Usually when a nurse spoke to me, it was either to give an instruction (sit up, swallow these, lift your arm) to administer care, or to go through a series of rote and uninteresting questions (what's your birthday, what is today's date, where are you) to gauge my mental state.

On July 3rd, my usual nurse - about whom I have no complaints whatsoever - was taking a much-deserved day off.  Let's call her replacement Sally.

Sally was young and pretty, and while she sounded a bit like a "Valley Girl" she was obviously intelligent and performed her duties - including getting me ready for dismissal - with skill and efficiency.  She also seemed to actually care who I was.  Hers were not the usual questions about the setting of my own personal drama.  Instead she asked me what I did for a living.  My title is long and far more impressive than it ought to be (to be honest I could never remember it without reading it off my own business card), and caught her interest, so she asked me to explain my work (I write reports analyzing market opportunities in the aerospace and defense industry, and no, I'm 100% civilian with no security clearance of any form).  She complimented my hair, which at the time made me look like an extra from Mad Max: still as long as ever but rather messy, save the part they shaved for the surgery and the resulting incision, which was sutured with 45 metallic staples.  She asked me where I lived.  If I had a girlfriend. 

It was the first time in days anyone had really acknowledged that I was not a disease, and that I did have a life beyond the hospital, one to which I would return.  Two weeks prior to that moment, I had no idea I had cancer.  I had hopes and dreams for my future.  Not ambitious ones but you take what you can get.  A 401k.  I thank Sally, deeply and sincerely, for remembering that, and I admire the tremendous amount of strength it must require.

Unfortunately not all of my nurses were quite so courteous that day.  They didn't want to dismiss me until they got a clear blood test, and as I've mentioned my platelets have a tendency to clump.  They drew my blood four times, even after my doctor confirmed that yes, my blood does that, and no, you don't have to keep jabbing the patient.  Each nurse assumed the previous one had done it wrong, or missed, or didn't get proper suction on the vial.  One in particular scolded me for having "bad veins," yanked my bed away from the wall, and stabbed the butterfly directly into my left wrist without the slightest warning.  I had never had blood taken from my wrist, and he did it with such little regard that it hurt more and healed slower than any of the IVs. 

The next nurse apologized for his co-worker's behavior, and sadly said that yes, sometimes nurses do forget that their patients are people.

Then he drew my blood again.

They finally did release me from the hospital.  They didn't even give me a wheelchair.  Three days where I couldn't even stand up without a nurse present, then they just give me a pat on the back and send me on my way.  They also gave me a scrip for oxycontin, which was nice of them I suppose but I really didn't need it and never filled it. 

As a side note, the hospital did send me a survey about my stay.  My response included an additional three type-written pages, including all of the complaints I've recounted here along with a handful of others too minor or mundane to make for a good story.  A few weeks later I received a letter in return, the address hand-written.  In response to my experience, a patient care advocate had launched an official investigation.  I'm still waiting on the results.

As I put my clothes back on, they felt strange.  So different from the hospital gown, and I had to be so very cautious putting them on.  I needed help with my shirt as I couldn't see my sutures.  Socks were an ordeal since I was forbidden to bend over; too much pressure could have caused a brain hemorrhage.  Fastening my belt felt like an odd triumph, like a buckle was somehow the clearest of all indicators that yes, I was wearing real people clothes again, and yes, if I had the uniform of a real person I could go be a real person. 

Even with my new-found freedom, I had to move slowly and intentionally.  I was still weak, and while I never felt unstable I was acutely aware of what might happen if I fell and hit my head. 

As we started the drive home we had to contend with the usual traffic, exceptionally dense and moving at a fair clip.  Minutes from the hospital, my mother decided to change lanes early to make sure she got in the proper lane for an upcoming exit.  Seconds later, there was a six-car accident in the lane we had just occupied, the lead car slamming on his breaks to avoid hitting some debris, the cars behind him left with no room to stop.  I saw it happen right outside my window.  There was no doubt in my mind that had we been in that accident, I would have ended up right back in the hospital or just plain dead.

My parents and I had decided it would be best were I to stay with them until I was confident I could live on my own again.  Never before had a bed looked so inviting.

Thursday, October 13, 2011


My parents arrived around 10AM, and when they heard of the previous night's delights they again insisted I be moved.  This time they demanded an empty room.

It's a selfish thing to demand since actual private rooms (as opposed to semi-private) cost far more, and we couldn't expect them to just toss out another patient so I could sleep better.  Except they didn't have to.  They never had to.  Half of the floor was totally empty; they'd paired us up so the nurses had to check fewer rooms on rounds.  Finally I was brought to an unoccupied room, and the staff said they would attempt to keep the other side empty, but they couldn't promise anything.  Reasonable enough, as another patient may need that bed more than I needed my rest.

Just as I started to fall asleep, I got a new roommate.  An old woman had fainted, and though she seemed to have recovered they still brought her into a patient room where she and her family loudly discussed what they would have for lunch.  Most of her family was already in the building, as she was Mr. Liver's mother.  She had refused to be put in the same room as her son because she "didn't want him to see her like that."  At that point I'd been at the hospital for over two days (three if you count the day of the surgery) and had managed about three hours of actual sleep.  I think they decided on ice cream.

After two hours or so she left, and her side of the room remained vacant for the rest of my stay.

Dr. Brain came to see me that day, and was pleased at how well I was doing, though he was surprised to see that I still had my drain.  It had long run dry and should have been removed the previous night, but it seems no one ever got around to it.  One of his assistants would later finally remove the tube, though the incision required additional stitches.  Two, to be precise.  He told me I could either take it without anesthetic and feel two pokes, or I could take it with anesthetic, but that would require two injections directly at the site of the incision (in other words, feel two pokes).  I opted to go without the drugs, and my scalp was numb enough that I barely felt it anyway. 

I received some more detailed neurological tests.  First I was asked to memorize three words, which I had to repeat at the end of the test.  I copied a simple symbol on a page, drew a clock from memory, and wrote a fake check (at least I really hope it was fake).  I could still write, though my normally messy scrawl was even less legible, my hand weak.  I was asked to do some basic math and count backwards from 100 by 7s.  They asked me how many boroughs were in New York City, which I got right despite having only been to the city about four times in my life.  Their evaluation was heartening to say the least: no physical or mental deficits.  They wanted to monitor me for one more night, but felt confident that I would be able to leave around noon the next day.  That meant a total of three in the hospital; they'd originally anticipated up to five.

My parents had brought me my laptop, which helped me to pass the time immensely.  Up to that point I'd had nothing to do at all, as they hadn't anticipated I'd recover quickly enough to be able to use a computer (or even to simply be bored, I suppose).  Netflix streaming video is a wonderful thing, as is Steam.

I'd told myself to hold off on communication.  Between the drugs and the surgery, I knew I couldn't trust myself to maintain proper conversational etiquette and decorum.  It was not only possible but probable that I'd say something depressing, or offensive, or embarrassingly nonsensical.  To those of you who may be faced with a similar situation in your future, this is really good advice, and your friends will totally understand if they see you online but you don't say "hi."

So I pretty much ignored my good advice and sent out a few e-mails, sent a few private messages, etc.  I did not completely abandon my plan and kept my conversations very short and basic, simple reassurances that things had gone well and hey, check me out, I'm totally still literate, and so I did manage to avoid later embarrassment.

I actually managed to sleep that night.  Sure, it was less than perfect.  A nurse still woke me up every hour to give me some medication, or check my blood pressure.  I called a nurse so I could go to the bathroom and no one ever showed up (I was helped half an hour later by one who came with a nice cup of pills for me).  They left the lights on and I had to sneak out of bed to turn them off myself.  Four separate nurses cheerfully said that of course they would close my door, and then immediately failed to do so.  Even so, I managed to fall asleep quickly after each interruption.  Compared to the previous night, it was quite restful.

I slept about eight hours that night, enough that when morning came I felt rested.  The steroids they gave me were partially to thank (or blame) for that. 

I also felt very ready to leave.  I was tired of being treated like a slab of meat.  No nurse offered me any opportunity to bathe, at any point during my stay.  Not even so much as a toothbrush.  I felt greasy and sticky.  I stank.  My hair was filled with dried blood and gel. 

You can imagine my surprise when a nurse started an actual conversation with me.

Wednesday, October 12, 2011

Waiting for Sunrise

A cancer center has to be a devastatingly difficult place to work.  I wondered how many people the staff had watched die.  How many never left my floor alive.  How many of my fellow patients, at that moment, were breathing their last breaths.  It must be enough to numb the soul.  I can understand why some people simply shut down and refuse to recognize their patients as people.  No sense getting attached when they'll be gone before long.

I pondered that as I was stuck with yet another needle.  One of so many I barely even felt them any longer.  They had me on steroids to reduce the swelling in my brain, which in turn threatened my blood sugar levels.  Finger sticks became as common as giving my name.  I was handed small cups of pills and told to swallow.  No one explained to me what I was taking, or why, or what the side effects might be.  The only time I got any sort of explanation was when I noticed an unusual-looking pill among the others, and asked if it was the correct medication.  It was, just a different brand.  I only noticed because I was aware of my surroundings and thinking with relative clarity.  What about patients who were not so lucky?  Those without the capacity to ask?  Must a brain surgery patient be so responsible for his own care even in the hospital?

The sound of alarms seared itself into my brain.  For a week after I left the hospital, I could hear that same repetitive buzzing in any white noise, especially that of an air conditioner.  Everything in that hospital began to beep wildly when it stopped working, or was about to, and everything in that hospital broke frequently and spontaneously.  It was so common there was not a single instant I could not hear an alarm somewhere.  The nurses did not seem to notice or care, possibly too common an occurrence to address.  They did not care if the noise bothered me.  I was not a person.  I was a chart.

That night, that awful night, one nurse placed a pair of sleeves over my legs, the sort that would inflate and deflate regularly to prevent blood clots.  It worked for about ten minutes, then promptly stopped and began to emit a loud, repeating tone.  I called for a nurse.  Twenty minutes later, no one had come.  Still it was beeping.  I called again, and informed the nurse that if someone did not come in and handle the situation, I would smash the device on the floor.  It was removed from my room within two minutes.

I couldn't even try to sleep during that night.  Every hour someone was in to inject something into me, or have me take some pills, or otherwise disturb my attempts at rest.  I begged for something to help knock me out but they could offer nothing, as they needed my mind to be clear, so they could monitor me for any abnormalities.  My lungs were weak and a chronic cough became constant.  They gave me a lozenge, but only one.  I was informed that if I somehow got a bag of them from outside I could have as many as I pleased, but the hospital could only give me one every two hours, as if it were just as strong as the morphine I was no longer receiving.  They left lights on.  They left the door open.  They laughed and chatted in the hallway. 

Meanwhile, Mr. Liver groaned.  Frequently, loudly and in agony.  His daughter was spending the night with him.  I can understand his pain.  I can understand her desire to be with her father in his last hours, though it may have been nice if someone had informed me I'd be spending the night with an unfamiliar woman in my room.  I had slept only about an hour in the previous day, only an hour since awakening from brain surgery, and I was running out of sympathy.  I did not understand how anyone could be expected to recover under such conditions, or if they weren't actively harming my brain as it struggled to repair itself.

Then came the high point of my stay.  As I mentioned I'd been coughing a lot, and had taken to spitting whatever I could produce into a paper cup.  It was one of many, the others stacked upside-down beside it, clean and unused.  Yet when the night nurse came to give me some pills, that was the cup he chose.  I didn't notice until I felt a wad of my own spit slide into my mouth, to which I responded, "this is the very wrong cup."

He chastised me.  He told me that I should have torn the edge of the cup, as though he would have noticed that in the darkness, as if that were the universal symbol for, "spit cup: do not use."  It was my fault that he'd made me drink my own spit.

I suspect he later gave me the wrong medication as well.  I was feeling slightly nauseous and asked for some Zofran, which had calmed my stomach quickly and effectively throughout my stay to that point.  He gave me a pill and claimed that was what it was, yet its familiar effects never came.  Not until the following day, when another nurse gave me another Zofran. 

Though I saw it only as a subtle and growing brightening of my room, the light of dawn was never so beautiful.

American Cancer Society possibly malignant

Greg Laden posted this interesting and eye-opening analysis of the American Cancer Society, an organization with a rather benign-sounding name and one - you would think - focused primarily on funding cancer research through charitable donations.

Not so, according to Laden and the Charity Navigator.  Laden goes into great detail on the matter and links to even more information - along with alternative, more principled charities - so go check out his excellent post over on his blog if you're interested.  The short version is that only about $0.25 per dollar is used for actual cancer research, though it's likely more than that it spent on other support programs.  Even so, the executives are extremely well-compensated.

One thing I noticed was ACS's accountability and transparency rating, which is ranked 4 out of 4 stars.  In other words, they're lining their pockets with money donated to cancer research in good faith, and they aren't even trying to hide it.  Takes a special kind of sociopath to do something like that.  The same sort who wouldn't take candy from a baby because it's more effective to kill a baby to lower demand in the candy market. 

On a more personal note, one of their reviews on Charity Navigator accuses the ACS of refusing donations from non-theist organizations.  Laden links an article that shows in depth the lengths to which the ACS went trying to not take half a million dollars from secular donors.  I guess they don't mind taking money away from cancer research, as long as it's none of that filthy godless money.  Meanwhile apologists are quick to play the "competitiveness" card, saying that high executive salaries are justified by proportionately more talented individuals.  Seems to me that if that were the case they'd be able to channel more money toward actual cancer research.  That is their stated goal, is it not?

Tuesday, October 11, 2011


I'd been warned that I might awaken slowly, bit by bit.  They said I might regain consciousness before I regained any motor functions, even the ability to open my eyes.  Instead, I came to with such clarity that I noticed that was not what had happened even as I said, "Hi Mom."

There had been no guarantee that I would recognize her, or anyone, or that I'd be able to speak, or even that I'd ever wake up again.  My next words, to my father, "Am I dead?"  That, in relation to some conversations I'd had with him before the surgery, addressing the questions in my, "Who am I?" post; I was not questioning whether I was in some sort of afterlife but whether I was still the same person.  I probably could have phrased the question better but hey, I just woke up from major brain surgery and was drugged out of my mind.

After the brief greeting I was wheeled off to the ICU.  I felt surprisingly good, all things considered.  My pain was so minor that the dryness of my throat was a greater discomfort; even drinking water would have made me vomit at that point and they had stuck a tube down my throat during the surgery, so I had to make do with the occasional tiny wet sponge to suck on.  It wasn't until the third or so that I realized I was allowed to suck on it instead of just holding it in my mouth.  Again, brain surgery, drugs.

It was actually quite remarkable how little pain I felt during the entire ordeal.  It stands to reason, of course.  There are very few sensory nerves inside the skull, and those in my scalp had largely been severed, leaving much of the top of my head numb.  What little pain I did feel was quickly controlled, and by the second day of my stay I didn't need anything for the pain at all.  During my entire recovery after that point, I never even needed a Tylenol.  What I did feel were strange sensations on my scalp and across my suture.  At first it felt like a wet dripping, which I mistook for blood.  A close examination revealed no bleeding at all.  For weeks after I would feel strange twinges from time to time.  Also an itch.  Intermittent but completely impossible to satisfy, as it was located on part of my scalp so numb I couldn't even feel my own touch.  But again, I'm getting ahead of myself.

Even with the drugs in my system and the fatigue from my surgery, I could not sleep in the ICU.  My nurse was constantly checking on me - which is to be expected - and my oxygen tubes kept slipping out, and I wasn't sure if I was supposed to have one or both in.  Maybe they didn't want me getting THAT much oxygen, I reasoned.  They frequently checked on a drain inserted into my head, a thin tube with a suction bulb on the end, which steadily drew a thick red fluid from my incision, lighter in color than blood.

As they wheeled my bed to the MRI, I felt kinesthetic shifts throughout my body.  I felt like they were wheeling me down a slope, and when they stopped I felt as though they were slowly pulling me backwards.  At one point I felt as though I was rising into the air, though looking around I could easily tell I was stationary.  Most of all I felt very heavy, which was an effect of the morphine.  That seemed to be all morphine would do to me: make me feel heavy and numb the pain.  No hallucinations or highs, or anything so interesting.  By that point every person I met would ask me for my name and birthday, and most would also run through a series of basic neurological tests to assess my condition.  It became so routine that one nurse would simply say, "tell me a story."

This is where things started to get kind of bad, and before I go on I want to make a few things very clear.  First of all, I feel that my doctors and most of my nurses did an excellent job caring for me, and I know that staying in a hospital is never fun.  Secondly, I have a great deal of sympathy for my fellow patients and wish them all the best of luck.  Third, I think that there's a point at which it becomes totally reasonable for a brain surgery patient to want some goddamn sleep and to hell with the doctors, nurses, and other patients.

They brought me to my hospital room, to let me rest.  At least, that was the theory.  The room had a nice view of the city and was really quite comfortable, except that it was a "semi-private" room, meaning I shared it with another patient and had all the privacy of a thin curtain.  For some reason they'd designed that particular room so that the patient farthest from the door (my new roommate) had to pass directly through the other patient's (my) area to get to his own bed.  My roommate, another young man who had been at the hospital for more than a month due to a spinal tumor, had several family members over and seemed to be having a small party.  They left entire food trays along my windowsill to be picked up by hospital staff, while talking loudly about how good the food was.  They blasted Christian rock constantly, even when none of them (patient included) were in the room.  For my benefit, you see.  My parents informed them that we are not a Christian family, to which they replied, "that's OK, Jesus will take care of you anyway."  Very kind people, very sweet and thoughtful, but they seemed deathly afraid of silence and would not shut up.  It was around the point that I heard my roommate on the phone saying, "we can't fit more than a dozen people in here so not everyone can come at once," that I thought maybe the situation was worth addressing.  My mother got me transferred to another room.  The next day, my former roommate had a party in his room, the entire day.

My next roommate seemed better.  I'd prefer not to identify another human being as a disease but as that's all I really knew about the man, I'm going to call him Mr. Liver.  Mr. Liver was suffering from liver failure.  Jaundiced and bloated, he didn't have much time left.  His family was there to see him and they were quiet and polite.  They seemed to be trying to get Mr. Liver to hospice care but were unable, as the hospital was short-staffed due to the upcoming July 4th holiday.  Either way, his family was courteous, he didn't seem too bad and my heart really went out to him as I knew he didn't have much longer.

He also peed all over the shared bathroom several times, and seemed incapable of speaking lower than a shout.

At the time that wasn't a big concern to me as I was still attached to a catheter.  They had me stand and try walking with the aid of my IV stand - less than a day after brain surgery and they already had me doing laps - and it was a little dizzying at first but I did manage it.  It made me very aware of how weak the surgery had made me; my gait had changed significantly, and while I never felt unsteady I did feel unsure of my footing at times, and had to walk very deliberately and carefully.

Once they determined that I could walk, they removed the catheter.  That experience was more socially unpleasant than physically, as my penis (and anus) were somewhat numbed from the anesthesia, or perhaps from the surgery itself.  Sensation would slowly return over the next two or so weeks, to my great relief, but at no point did I lack control of my bowels and bladder.  The problem was that I was still hooked up to a saline drip, which meant I needed to go to the bathroom every hour or two, yet for liability reasons they refused to let me get out of bed without help.  Unfortunately the nurses would rarely come immediately after their summons.

The nurses wanted to keep track of our urine so we each had separate containers, and my nurse (who herself was very kind and skilled) was rather horrified when she saw that my urine had apparently turned nearly black.  My roommate didn't take the time to read the labels on the containers. 

As visiting hours drew to a close I was less than thrilled with my circumstances but found them tolerable, even though at that point it had been about twenty hours since I'd last slept.

Thus began one of the worst nights of my life.

Monday, October 10, 2011


I don't remember much from the day of the surgery.  Maybe due to my nerves, maybe because there wasn't much to remember on that day.  Maybe because those were the freshest memories I had at the time of the surgery; the ones, I'd been told, I'd be most likely to lose. 

I think it was around 10AM.  I went straight from the hotel to the hospital.  They brought me to a small corner of a crowded room and had me sit on a tiny bed surrounded by machines, separated from the clamor by a thin curtain.  I could see the city through what little of the window remained exposed, the venetian blinds nearly all the way down.  I had to remove all of my clothing and put on a hospital gown, and socks with a rubberized texture on either side.  My clothing went into a long, dark-blue bag with a zipper running down the front.  I couldn't help but notice how much it resembled a body bag.  A nurse gave me a few final tests to make sure I was ready for surgery.  Blood pressure, that sort of thing. 

Then I was in a hospital bed, being wheeled through the hospital by a kind nurse and orderly.  We chatted during my trip.  Light conversation, jokes, my defenses of choice.

In the operating room I met my nurses.  One of them went by one name only.  "Like Cher?," I asked.  They laughed at that.  I can still remember their eyes.  Their faces and heads were covered of course, but I could see their eyes.  They warned me that I would feel a pinch, and they started inserting the IVs.  Three of them, judging by memory and by the three tiny scars I now carry, one on the back of either hand and one on my right wrist, for the arterial IV.   I remember staring up at the fluorescent lighting in the ceiling, focusing on how I felt, trying to watch the anesthetics overtake me.  If I succeeded, I do not remember.

The operating room was state-of-the-art, specifically designed for treating gliomas.  During the operation I would be resting on a bed attached to an arm so that they could rotate me into an MRI right there in the room, and check on their progress in the middle of the operation, without even closing my head up.  I was told that my head would be secured using some sort of gel, which I believe since I was picking the stuff out of my hair for weeks to come.  Based on my own research and from watching a web seminar given by Dr. Brain in the days following my surgery, I now also believe some sort of vice-like device was used to hold my head still, as evidenced by three scars on my head, one behind the left temple, one behind the left ear, and one behind the right ear.  They never mentioned these to me, nor did they provide sutures.  The first we learned of them was from my mother washing my hair and exclaiming, "there's a hole in your head!"  A rather reddish, angry hole, to be precise.  They have now healed, but I doubt the hair will ever regrow. 

From what I understand, I was under for about nine and a half hours.  Only about five of those involved surgery; the first four and a half had me waiting for the doctor, something to which I have become quite accustomed though I do wish they'd have the courtesy to knock me out every time.  Five hours is about average for a surgery of the sort, and while I apparently bled a surprising amount, there were no complications.  Even so, they had no idea how it would turn out until I actually woke up.  After the operation, Dr. Brain met with my parents to tell them how it went and to again try to prepare them for all possible outcomes. 

The incision is in something of a hook shape, staring beside my left ear, right up my sideburn, then curving around just behind the hairline until it reaches the very center of my forehead, stopping right at the hairline.  It was sutured with 45 staples, which now sit in a small jar on my shelf.  A small piece of my skull was removed, then later replaced with a series of four titanium plates.  "Plate" is a generous term, as they're really just small tabs used to connect pairs of screws.  I can feel them under my skin.  The tumor contained a few cysts that had to be drained before resection, thereby changing the shape of the mass, which again shows the value of the in-OR MRI.  Dr. Brain was able to remove 98% of the mass, but did not operate on the right hemisphere or the corpus callosum, nor did he attempt to scrape any lingering cells from a pair of large blood vessels that the tumor had been pressing against (possibly the cause of my migraines).  The mass was preserved and frozen so that it could be analyzed for a pathology report, which would tell us precisely what we were dealing with and inform us as to how we should proceed.  I would later donate the leftovers to the cancer center for research purposes. 

Given the amount of brain that had been removed, the painkillers in my system and the lingering anesthetics, I remember waking up surprisingly well.  In particular, I remember being surprised that I immediately knew where I was, why I was there, who was around me, and that for all intents and purposes I felt pretty much normal.

Which was really very fortunate, because my hospital stay was so bad it literally lead to an investigation.

Steve Jobs, Dr. Nick and Cancer Quackery

I think that Orac puts it pretty well in his recent post on Nicholas Gonzalez lamenting that he could have saved Steve Jobs.

As Orac notes, Gonzalez is a practitioner of "alternative" cancer treatments, based mainly on nutritional supplements and routine "coffee enemas," just in case you want to temper the joys of having cancer by blasting a cappuccino up your ass on a daily basis.  Gonzalez bemoans how the biased media treats him and his fellow miracle workers, and how all those high-falutin', book-readin', "oncologists" get all the credit just because they treat patients with their fancy "medicine."  Orac does an excellent job skewering the guy but I think the most important take-away is that Gonzalez's treatments have been shown to lead to worse results than the control group. 

In other words, it's worse than doing absolutely nothing.  He is harming patients by leading them away from conventional and effective treatments, and harming them again by actually promoting their disease rather than suppressing it.  And again, can't stress this enough, coffee enemas.

That said, I think Orac may be mistaking ignorance for malice here.  I try to take people at their word - which is admittedly a naive thing to do - and I think that Gonzalez believes his hype.  I think he does think he can work miracles while the establishment tricks cancer patients into filing into monolithic hospitals to be ineffectually butchered.  I do think Orac gives a pretty good framework for why he could believe that (namely for a lack of understanding of the scientific process).  So I don't think Gonzalez means to hurt anyone, here.  The problem is, he does, and that's my problem with quackery, woo and alternative medicine in general.

Now I understand the placebo effect.  I understand that prayer can actually help people, even though I attribute that more to psychology than theology.  I think there's a place for that in modern medicine.  The thing is, it must be part of a larger, science-based treatment regimen.  Even when the alternative treatment itself isn't harmful, if a patient forgoes conventional, effective treatment in favor of alternative techniques, they are being harmed.  Time is critical for cancer patients.  Waiting to see if some snake oil works can cut years off a patient's life, or cut it off entirely. 

I'd love it if these treatments worked.  I'd love it if I could be cured of this disease without being cut apart and exposed to dangerously toxic substances.  I'd love it if I could drink a $0.50 cup of herbal tea a day instead of tallying medical bills. 

But I can't.  To hell with anyone who tries to make a buck off convincing me otherwise, no matter how sincere they may be.