Tuesday, December 27, 2011

Little Kindnesses

You're always so polite!  You're one of my favorite customers!
 That's what the young woman at the register said to me today.  She worked at a sandwich shop, one that I frequented maybe once a month, if that.  It served hundreds of customers a day.  Yet merely because I'd always end my order with "please" and say "thank you" whenever handed something, even my own credit card, she remembered me and appreciated how I'd treated her in the past.  I was kind of stunned.  I didn't think I'd done all that much; just paid her the same courtesy I pay everyone.  I guess that was enough to make me stand out to her.  That's a little sad, that we've fallen so far that we can't even thank a stranger providing us with a service, but it still made my day, to know that her life was one iota better because of me.  And let's be clear, I'm not saying she'd be a depressed wreck were it not for my infrequent "thank yous," and when I say iota I mean the smallest degree possible.  But still, better.  Because she let me know about it, that made my day.  Another little thing, but a small reason to feel a little better.  To be honest I remembered her too, but she's usually working the register when I happen by and I haven't seen thousands of cashiers the exact same context since I last saw her.  I'd noticed that she was always smiling, always cheerful, and always told me to have a great day as I left.  I'd always respond with a "you too!"  I thought she treated all customers like that.  Maybe she does.

I put a lot of stake in these little things.  I try to smile at people and as I said, I'm courteous to everyone I meet.  Maybe it's a habit formed by my low self-esteem, a hope that I could seek approval from an unbiased party that knows nothing about me, or maybe it's just who I am.  I prefer to think the latter.

Once in a theology class - stop me if you've heard this one before - a classmate asked me, "if you don't believe in God, what stops you from murdering everyone?"  I resisted the overwhelming urge to cackle, "nothing," seeing as it was a class about understanding other beliefs and she had asked the question sincerely, but this is one of the most common questions the religious ask me.  I explained to her the value of camaraderie, the penalties of law, and most importantly how I still have ethics and morals even if I do not take them from a particular book or fear of divine punishment.  And I explained to her how the absence of God places upon us a responsibility to one another.  Essentially, we need to help each other as much as we can, because no one else will.  That's why I'm not holding out for a miracle - something inexplicable that would benefit only me - but for science - something understood that would benefit all.  And if you're wondering why an agnostic was taking a theology class in the first place, I was taking it for the same reason as everyone else: I was sociologically interested in the various religions of the world. 

That said, I really hope that girl never loses her faith, because if she does, yikes.

(It's my belief that the religious do have ethics and morals that are independent from their code of religious beliefs but that religion is the most obvious and immediately recognizable codification of those morals, and so few feel the need to examine it much further than that.)

Thursday, December 22, 2011

MRI Results (for reals)

After an extended and completely predictable series of screw-ups between the mail system and two separate hospitals, both of my oncologists have now seen the MRI report and the images, and have had enough time to make sense of both.  So the conclusive, official result is that I'm stable.  Nothing new, no signs of progression.  In other words, about as good a result I can expect outside of miraculous recovery.

I still have some things to get done before my next round, mostly getting my hands on the proper medications without having to drive half-way across the state, but otherwise it looks like I'll be starting my next cycle on schedule.

The side effects were pretty mild this time around.  Some fatigue and fog, but my appetite held stable and I still haven't had to take off any work (which is fortunate, as I must admit there are days when I simply fill a desk due to aforementioned fatigue and fog).  My hair seems to have stopped filling in, leaving me with a pretty significant bald patch above my left brow.  I still hold out hope it'll come back in at some point but for the time being it looks like I'm keeping the bandana.  There are a few products out there that can give me a closer shave than my current electric razor so maybe I'll pick up one of those and go bald.  I have quite an impressive dent in my head but it's easy to overlook due to its position and angle.  I must admit that I'm actually a little proud of it.  What'd you do this summer?  Oh, Cape Cod?  Fancy!  I had brain surgery.  No big deal.

A new question has started to pop up more and more, one I'm going to add to the list of, "things I wish people would stop asking."  This one is, "so you're done with your treatment, right?"  The question is difficult and depressing to answer.  I usually start out by explaining that yes, I'm done with radiation, but no, I won't be done with my treatment for about two years.  Then I see their smile vanish and the, "holy shit, you still have brain cancer" return to their expression.  Then I explain what 5/28 cycles are, usually without mentioning that my chemo dosage is much higher, or why they want to keep giving me chemo at all.  They usually come back with nothing, or, "well you look great!" or "your color's so good!"  Thanks.  I'm increasingly tempted to say, "you too."  People already know that I'm sarcastic but I'm increasingly aware of two things: first, that I'm a lot more familiar (and comfortable) with my cancer than most other people, and second, that never in my life have I given less of a fuck about empathy.  I'm sure between that and my new tendency to draw a blank mid-sentence sometimes, a few people have come to the conclusion that I am now a bit "off."  I've always been uncomfortable around people who are like that, so all I can do is hope I'm not making anyone else feel too weird.  Hey, look at that!  Empathy!  OK, I guess I still have a little.

Anyway, to all my loyal (and not-so-loyal) readers, followers, fans and stalkers, I hope you enjoy your holiday (or lack thereof) of choice to the best of your ability.

Monday, December 19, 2011

Snake Oil

Don't eat and don't breathe.  That seems to be what the quacks are telling me these days.

They point out that cancer needs nutrients to grow.  They point out that oxygen produces free radicals, which cause DNA damage.  Both are true, but what's to be done about either?  It's like saying I can prevent excessive bleeding by draining all my blood on a daily basis; it might work but it would kill me first.  I guess that's why they can claim it cures all forms of cancer; technically it does, along with every other physical, mental and social ill I may have for the rest of eternity.  Then they tout all sorts of all natural things I can put in my body to do... something.  Something magical.  They talk like cancer itself is a toxin and that carcinogens contain that toxin, so that if I have cancer I can somehow starve it by no longer ingesting these carcinogens.

I don't know if these people are naive or cruel.  I like to think they're naive but some have made a career of it.  Dr. Oz is a monster.  It's one thing to peddle sunflower seeds as a way to reduce wrinkles or whatever such nonsense but it is beyond irresponsible to offer a cancer patient an "alternative cure."  All it does is encourage them to forgo potentially life-saving treatment in favor of something that has never worked and will never work.

It's hard, when you have cancer and when someone who loves you believes the pseudoscience.  They send you these articles about these miracle cures.  They do it because they love you and want to help you.  They lie to themselves, and take false hope and false comfort in those lies.

And you, for that split second, before you realize what you're looking at... you share that hope.  That animal part of you, the one who just wants this all to go away, sees that someone is offering a cure.  Someone is offering a way to make it all go away, and no matter how well-educated you are, or how much you know, or even if you can immediately recognize a hoax, it still stings.  The lie speaks to a place more primal than logic or education.  The place that can make a grown man as helpless as a child, literally crying for his mommy, or alternatively, react entirely on adrenaline, faster and stronger than he ever could be were he thinking at all clearly.

So my soul is stirred in that fraction of a second.  It feels hopeful.

Then the hope is immediately crushed, because it is a false hope.  It is a cruel hope, peddled by the heartless who know that so many are so desperate to keep hoping, and keep watching, and keep drawing those precious advertiser dollars.  Even though I don't believe in the hope for even an instant, it still cuts me deep.  It is an offense.

For while my family may send me a message because they love me and want me to be well, the message reads, "I don't care if you die in agony as long as I'm financially successful."

And that, I cannot abide.

Monday, December 12, 2011

MRI Results

I had my MRI on Friday, a somewhat different and less pleasant experience than my previous MRIs.  It was my first time at that particular facility and I think they may have been using a more powerful magnet (3.0 Tesla as opposed to 1.5 Tesla), which necessitated more arduous safety protocol (triple word score!).  Instead of taking away my cell phone and telling me to have at it, they required me to change into a hospital gown.  I could keep my underwear and my bandana but that was it, and I declined on the bandana since I'd really rather not spend 40 minutes resting my head on a knot.

On to the important part.  I won't have the official word for another day or two, but Dr. C. called me the same night, after office hours, to tell me that... everything looks fine.  From a quick once-over, he said it actually looks pretty good and didn't see anything new to worry about.  He went out of his way to call me because he's dedicated, not because there was anything that needed immediate attention.  I'm going to swing by his office today to drop off some copies of my earlier MRIs; I tried to give them to the MRI operators but they didn't want them.  Some question of providence, I guess.  They said they'd get them directly from the other facilities.  Dr. C. seemed surprised by that and requested I bring the discs to his office.

My appetite's held pretty stable, though I have forgotten to eat a few times over the last several days.  My energy level, not so much.  I felt OK on Friday but was told I looked pretty bad, while on Sunday I felt much worse and was told my color had improved since Friday.  It's kind of annoying that my physical state shows that much in my face, especially when it doesn't always match how I feel.  I sort of wish people would stop talking about my color.  I know that the implication isn't, "you're really sick so I'm amazed you almost look healthy!" so much as, "the other day you looked like hell but I didn't want to say anything and I'm glad you're doing better now." 

I'm still not totally devoid of symptoms.  That tiny burn mark remains in the center of my left field of vision, still so small I only notice it when I isolate it within the body of a single character of text.  I'm not sure I'll ever be rid of that.  The eyestrain's getting kind of bad, too.  I really need to get some glasses already, as I have more than a year now.  My hands were trembling again on Friday and my mother noticed, so it's unfortunately not just my imagination.  They haven't given me any trouble since, but I really hope this is just a passing symptom.  I spend all day typing.  My hands are my livelihood.  At least they usually are.  I've been wandering through a patch of chemo fog and the words aren't flowing, even by their new, lower, standard.  Hopefully this post will act as something of a writing exercise and throw some grease on those gears. 

Wednesday, December 7, 2011

A few updates

I thought today might be a good day to look back on a few things I've mentioned in the past and left unresolved.

For starters, Sam's seen a few more doctors and it turns out he's fine.  His symptoms were caused by fatigue and eye-strain, and his opthamologist recommends glasses.  I'd prefer if he'd had a cranial MRI just to be sure, but I'd prefer everyone have one and it turns out the insurance companies don't really care that I think they should pay for more uncomfortable, expensive and likely unnecessary tests. 

That red blur to the far left of my peripheral has finally faded.  My vision problems are mostly resolved now, save some light sensitivity, the occasional flash of white or black, and that tiny little burn mark in the center of my left field of vision (still so small I only notice it when I'm reading and it plants itself firmly inside a letter).  My vision's still kind of blurry but, like Sam, I could probably use glasses.

My neck hasn't felt too bad over the last few days.  I'm still getting that MRI on Friday and am still concerned about it, but not as much as before.

Instead I have a new concern!  It seems there's a rare but severe side-effect to gadolinium-based MRI contrasts (including the one they use for profusion MRIs, which are what I've been getting).  It only happens in the case of severe kidney damage, but I went through most of my life with brain cancer so how the hell do I know what shape my kidneys are in?  Anyway, one of its symptoms is a skin rash with tiny mucin-filled nodules, and that's really the part that caught my attention.  Those patches of dry skin on my legs have a few nodules like that (turns out that stabbing pain I felt was caused by rubbing one of those nodules against my bedsheet).  That's just one of many symptoms, and even then it's not dead on (instead of dry skin I should have severely thickened and calloused skin, and the nodules are about half the size they "should" be), but it's enough that I'm going to have someone take a look before I let them inject me with contrast again.  Just to be sure.  After all, if that is what it is then I'm going to need to get myself to a nephrologist in short order.  If not, maybe I can get some moisturizer or something, or use some of the anti-bacterial/steroidal cream left over from my radiation treatment.

Other than that, hanging in there.  My appetite's been pretty stable and the fatigue's wearing on me but I'm still able to work.

Monday, December 5, 2011

Two cycles down, 22 to go

Last night I took the fifth and final dose of chemo for my second round.  I skipped the Xanax all five days, instead going with nothing but Zofran, and noticed some pretty clear differences.  Primarily, my stomach hurt more, and I got closer to nausea but didn't have any close calls (or not-so-close calls).  Hopefully the fact that I skipped the Xanax means I'll have an easier time bouncing back from this round, as I won't be battling withdrawal from that.

My sleep patterns have been all out of whack.  I can nap for three hours in the middle of the day, no problem, but I find myself tossing and turning at night, waking up frequently.  I'd say the two might be related but the same thing happened whether I took a nap or not.  Even so, I felt surprisingly awake this morning.  It is no longer morning, and I will be taking a nap when I get home.  I don't care if it takes three hours and if I don't sleep tonight; I'm really freaking tired. 

My neck continues to trouble me.  The pain isn't constant but it peaked over the weekend, edging a little higher than it was as of my last post.  The sides of my thighs are very dry, and while sleeping the other night I suddenly felt like I'd been stabbed, but there was no mark, not even any tenderness.  It's reminded me of an episode I had back in 2008.

I was in a car accident that totaled my vehicle, even though I walked away and didn't even want to go to the hospital (mistake number one).  I felt fine for a few months, and to be honest I'm only guessing these two events had any connection at all, like some sort of soft tissue damage, because otherwise there aren't many other explanations for it and none of them are good.  Anyway, I was sleeping when suddenly I threw out my back, and I don't mean the usual intense but bearable pain.  I mean the worst pain I've ever felt in my life.  If I so much as tried to roll over, the pain would be so intense my entire body would clench uncontrollably, and it'd take me a few moments to relax again.  From what I've read, it sounded similar to accounts of people trying to move with a broken back.  The pain did fade, but it moved as it did, until it settled not in the small of my back but at my right thigh, and that's why I suspect the car accident may have been involved, as I was bracing myself with my legs at the moment of impact.  Eventually the pain subsided entirely so that I no longer had any trouble getting around, but I think I suffered some nerve damage.  That thigh would ache mildly every morning, and if I were to sleep on it I'd feel pins and needles, and little twinges.  That remained with me for two years. 

I think about that every time I feel an ache in my neck, or my back, or anywhere else, really.  It makes me wonder, was it the car accident?  Did I simply throw the hell out of my back?  Or was that a spinal tumor making itself known?  It is one of the few places where my brain tumor could metastasize, after all, and it's had plenty of time. 

My hands were bothering me a bit today.  For a while I felt a tingling spot on my left ring finger that came and went (it seems to have gone home for the evening and now I feel close to normal).  My hands started to shake slightly and I still don't feel like I'm at my most stable, but I've rested my arms for a while and it's mostly subsided. 

It would have been really nice to have a couple of months (or years?) worry-free.  My MRI is on Friday at 2:45PM (Eastern).  I hope it turns up clean but if it does then why the hell am I feeling these symptoms?  If it doesn't, then what can be done anyway? 

What a mess.

Thursday, December 1, 2011

Round 2

I went to see Dr. C. yesterday.  Short version is that my CBC checked out fine so I'm now one day into my second round of chemo.

The office was much more crowded than it was the first time I visited, so much so they didn't even have a room for me.  I spoke to the nurse in a separate waiting room, beside a rather nice fountain, sitting at a card table.  This was the same nurse who saw to me previously, the attractive young lady who had commented on how close our ages were.  She wasn't sure if Dr. C. wanted blood drawn or a simple finger stick, but I figured she'd been so good with the butterfly last time that it was actually the more comfortable option.  She missed this time.  As she apologized profusely she dug the needle around, the tip scraping over things that did not like being scraped.  I sat there assuring her that it's all right, not a big deal, as I tried not to flinch or lose my usual smile, and I won't say that had nothing to do with the fact that she was, as noted, attractive and close to my age.  Eventually she gave up and withdrew the butterfly, apologizing once more before fetching another lab tech.  "I never stick someone twice," she told me.  A kind policy to be sure, but I still have faith she won't miss next time.  Or at least I'll let her give it a shot, so to speak.

I told Dr. C. about my stiff neck and the occasional pain behind my eyes, and while he wasn't concerned he thought it prudent to move my MRI up by a week or two.  It's only every other month when I don't have symptoms; when I do, no harm in checking.  Even if they find something, I'm not really sure what they'll do about it.  They can't give me radiation again.  They don't want to operate again.  It seems like it's chemo or nothing, and I'm already on chemo.  Maybe they'd want to up the dose?  No point worrying about it now, I guess. 

So I took my first dose of chemo last night.  I've lost over 10 pounds since my last round, largely due to my loss of appetite, and skipped the Xanax this time since I don't like how tired I get coming off it.  Either way, it hit me much harder than previously.  My stomach hurt most of the night, and I slept poorly.  There were a few times I thought I might be feeling some nausea coming on, but I managed to keep everything down.

I wonder what I'm supposed to do if I throw up before I've fully digested a dose of chemo.  Wouldn't that be an underdose?  Maybe I'll ask Dr. C.

Tuesday, November 29, 2011

Motivation (or something like it)

Yesterday was an unusually productive day for me. 

I've always had a tendency to coast, tempered by a work ethic strong enough to make a good impression.  Not ideal for anyone but it works.  Over the years it's instilled in me a sense that more is less, or that my optimal state is to be at rest, with nothing in particular to do, nowhere to be, and eventually, no capacity to easily find something to do or place to be.  In other words, I spent most of my life meeting my obligations and otherwise doing as little as possible.  I'd go straight home most days after class/work and veg until some other obligation came up (usually class/work again).  I told my therapist that I never felt like I had the energy to stay out in the world and do other stuff, or even expose myself to other stuff.  She asked me - rightly - how much more energy that actually takes. 

After yesterday, I feel her point.  Sitting on my couch watching TV takes very little effort, but standing around some place that isn't my home takes very little effort too.  Sometimes the drive is shorter and the food is better, too.  I somehow doubt I'm going to turn into a bar fly - change takes time, after all - but it's given me something to think about.

In addition to the post I wrote yesterday I got quite a bit of work done, of reasonably high quality.  I paid some bills, canceled one appointment, made another, answered some e-mails, did some banking, walked around a store for a while, opened a new credit card account, picked up some meds, and went grocery shopping.  Normally I consider it a productive day if I get even one of those things done.  Yet despite my intense dislike for night driving and traffic (both ubiquitous by that time of night), my decision to go home wasn't a matter of desperation or fatigue, but simply because I couldn't think of anything else to do (and I had some food in the car that needed refrigeration). 

I know a day of chores is hardly interesting but it did give me something to think about.

On that note, I need another cup of coffee.

Monday, November 28, 2011

Happy Turkey Day

The long weekend did me some good even though (or maybe because) I slept through more than half of it.  I struggled not to go out on Black Friday but my hand was forced when I found that the only food I had on hand was a can of tuna that very likely would have killed me (it took half a can of Airwick to mask the smell).  Thankfully I had the energy to deal with the evening traffic, though it was a short drive and any problems I encountered were more the usual sort: elderly folks who really can't see well enough to drive anymore.  As someone who has had trouble with the blinding furnaces that pass for headlights these days, they have my sympathy.  They just have much more of it when they're not forcing me to do 20 in a 45. 

My parents and I celebrated the holiday on Saturday, though traffic was still heavy enough that I had to take the back roads.  They still can't cook.  I brought a jar of gravy in the hopes Mom would notice that it was not "her gravy" - which is to say not au jus with all the fat skimmed off - and she seemed afraid of it once it started bubbling in its saucepan.  It wasn't a bad evening.  We didn't fight, and they seemed very happy to see me.  Absence makes the heart grow fonder and all that. 

I've been having some minor headaches still, occasionally a little twinge behind one eye or the other, or a stiffness to the nape of my neck.  The pain is hard to describe, almost like a sinus pain.  Worrying, as they remind me of pains I had before my surgery, which were alleviated afterwards.  Pains due to pressure.  I'm about due for another round of chemo but I don't really know what sort of impact that will have.  It seems impossible that my cancer could have grown so much, so quickly that it'd be causing pressure headaches again.  Maybe it's a side-effect of the chemo?  But then why would it kick in so long after I took the stuff?  I don't even know if it matters.  There's not much they could give me to treat it, no matter what it is.  Just steroids, and I don't want to be on those for the next two years. 

Even so, it makes me nervous.  It's more than a pain in the neck (ha!).  It's a sign of things to come.  I can brush off my fears, the terrible awareness of my sickness, all that because most of the time I don't feel that bad.  A little tired?  That's not unusual for me.  No appetite?  I could stand to lose a few pounds.  Trouble focusing?  I just need a challenge.  But pains from within my head are harder to explain away.  I know they'll get more severe over time.  Even if they aren't serious now - even if they aren't even meaningful now - they will be someday.  Someday I won't be able to ignore my disease because it will refuse to be ignored.  It will be a constant presence, crushing itself into my consciousness, and it'll get worse and worse until there's nothing left but the pain and the confusion. 

And then I'll die.  I probably won't even be aware of it, which I'd say is a small mercy, except I don't know what I'll be "aware" of at that time.  Will I pass in a calm sleep?  Will my last thoughts be of battling hallucinations and delusions?  Will I be aware of those at my bedside, or will I die alone? 

I know these thoughts do me no good and I try not to obsess.  They're still just an intellectual exercise for me: imagining how it might be for someone else to die of brain cancer.  Except eventually, the disease will intrude so profoundly upon my life that I can no longer ignore it or bottle it down inside.  That bottle will shatter, and when it does, I fear what shall issue forth.

So, yeah, Happy Thanksgiving.

Monday, November 21, 2011

Well, that's a little better

I'd like to say a restful weekend helped get me back on my feet but to be honest I've stopped trying to figure this out.  I feel quite a lot better today.  I have more energy, I feel more alert, and my cough has even relented somewhat.  I managed to eat a little more over the weekend so maybe that has something to do with it, too.  Hopefully it'll last at least until my next chemo treatment, and if it doesn't then I can deal with that, too.  I have a long weekend coming up for Thanksgiving and I'm hoping that'll help me reset completely.  I believe my next round of chemo is in early December so it'd be nice to have a little time feeling normal.

My friend Will up in Canada has delayed his next round by a week.  His blood tests showed that he was just barely within normal platelet levels so they want to give him some more time to recover.  The fact that his chemo could still have that much of an impact on him after three weeks might help explain why I'm still fighting symptoms even this far out myself.  Even with my delayed symptoms, he's still taken it harder than I. 

Right now, it's Sam I'm most worried about.  I mentioned him way back in the beginning, as a close friend and co-worker, the first person I told and one who's been supportive this entire ordeal.  Well, he's started having some problems himself.  His wrist has bothered him for a long time but his doctor said that was carpal tunnel.  He's recently been seeing a cardiologist for heart murmurs.  Then today, he has a visual disturbance in his left eye, what he described as a "black donut" that appears around whatever he's looking at if he focuses hard enough.  It's a terrifyingly familiar symptom.  It's typically caused by pressure on the retina, but that can be caused by all sorts of things.  He has a family history of glaucoma, for instance.  It sounds terrible to wish a disease like that upon a friend; I just don't want him to have brain cancer.  Thankfully he's being very pro-active about it.  It started this morning and he already has an appointment with an opthamologist.  Dr. C. recommended a neuro-opthamologist to me so I'm going to get Sam his contact information as well, just in case. 

And if it turns out to be something serious, well, he's been there for me.  I'd return the favor in an instant.

Friday, November 18, 2011

Staring down tigers

This isn't going to be a dumb joke about running slightly faster than the slowest guy.

Staring down a tiger is a frightening thing.  It can kill you in a few unpleasant ways, but if you show no fear and look it right in the eyes, it won't be quite so eager to do so.  You'd think that'd be an easier thing to do when you have friends with you, or at the very least other people who are disinclined to be eaten by a tiger.  But having company also means that sometimes, you need to watch someone else get eaten.

I've been hanging around the Cancer Forums lately, comparing notes, sharing my limited wisdom... essentially what I do here, except people respond more often.  I've met a few people who are staring down the same tiger as I, but rather than feel simple comfort and comradery, I also feel sadness.  These are good, kind people.  They don't deserve this.  Some of them are even pretty close to my age.  It's good to know that I'm not alone but I still feel powerless.  I've been trying to help others best I can, and some of them have given me some new leads to follow, too.  The only thing that seems clear is that cancer treatment is really confusing and complicated.  I find myself wishing my fellow tiger-starers a lot of luck, but things get awkward when I get away from the science.  How many ways can one say, "I'm sorry for your pain," even if it's always true?

I've been feeling weird today.  Weird enough that I'm a little concerned.  My body feels heavy and unstable, and like it isn't really mine.  I have trouble focusing and forming sentences on the fly.  A few times now I've sort of dove in and had to pause mid-sentence to figure out how to get where I was going, which I suppose is an improvement over my usual stammering, going "bleh," then starting over again.  I still have my cough to keep me company and I wonder if maybe the force of that shook something loose, or open.  I haven't yet found a good answer for why I feel like this, but then again I haven't really been looking.  Other people have noticed, and asked me if I'm OK.  If this is from my chemo, I can only hope things'll get better over time.  I do not relish the thought of a year or two of this.

I want to go sleep for a while.  I've been getting so much sleep lately.  It quiets my mind, rests my body, and when I lie on my side it lets my post-nasal drip drain so I can actually stop coughing for a while.  It beats back the intruding cold of impending winter.

Monday, November 14, 2011

I don't know what's wrong with me.

I'm still not back to my usual self, whatever that even means anymore.  I don't feel like I'm here.  My mind is fuzzy and things don't seem real to me.  It's like things move differently.  I feel quiet and subdued, and when I try to speak my words feel like rambling or muttering, or don't come out at all.  I'm having trouble hearing and understanding people.  I've had quite a lot of sleep lately, though not only for my fatigue.  It's one of the only ways I can stop coughing. 

What my pulmonologist diagnosed as post-nasal drip has been driving me nuts lately.  I can't stop with this sharp, unproductive cough.  Sometimes it gets so severe I nearly vomit.  If I rest on either side it'll fade and eventually stop over the course of about ten minutes, but even rolling over is to roll the dice.  Sometimes it disturbs things and I start coughing all over again.  I'm getting desperate.  I need to find a way to treat this, even if it means injections to figure out exactly what's triggering it, then more to desensitize me to it. 

I wonder how much of my suffering is from malnutrition.  For days, I've suffered the two-pronged attack of having absolutely no appetite, yet occasionally suffering intense hunger pains.  It's a strange sensation, to feel that hungry, yet to be unable to bring oneself to each more than a mouthful or two of anything.  I've found popcorn and rice cakes to be ideal.  They're light enough that I can usually get a fair amount down, and their dry, crispy texture scrapes the mucus from my esophagus, giving me a temporary reprieve from the coughing. 

I'm starting to understand why some cancer patients turn to marijuana.  I've never smoked it myself, though I've smelled it wafting out from under dorm room doors countless times and attended at least one party where the air was thick with the stuff.  These days I could use something to give my appetite a little kick start.  And my mood, too. 

What I really need is something to help me focus.  I nearly killed myself the other night, driving down some unfamiliar roads.  It was very dark, and while I saw a stop sign it was in an odd position and angled strangely enough to confuse me as to which fork in the road was the primary.  Had I been any slower on the brake, I would have been T-boned.  Instead all I got was a well-deserved honk, and a reminder that perhaps I shouldn't be out driving so late.  Especially when I'm still suffering from a sensitivity to light.  I swear there's a special place in hell for people who never turn off their high-beams, or have improperly calibrated high-intensity headlights. 

I recall speaking to my co-workers about headlights earlier this year.  I told them that I could swear they were getting brighter every year.  I even wrote a letter about it to my congressman.  It got so bad I bought a pair of sunglasses to wear on busy roads.  Of course now I see that for what it really was: a symptom, not an observation. 

At times, I wonder if any of them recall those brief conversations.  I wonder if they too now understand that they were signs of a much bigger problem.  I remember the severe stomach pains my co-worker used to feel, for months before he was diagnosed with pancreatic cancer.

But I can't start with the "what ifs."  I can't blame myself for not seeing the signs.  That's a path down which I can't go.  For you see, it wasn't always just subtle symptoms, little nudges toward a terrible truth.  Sometimes it was something I - were I a more spiritual person - might consider paranormal insight. 

For my entire life, I've gone through the paces.  I went to school as I was supposed to.  Then college.  Then I got a job.  My quote in my high school year book bemoans this inevitable cycle: studying to get into college, so we can get a good job, so we can work long enough to give ourselves a few years to live before we die.  Even so, I never actually felt that my life would turn out like that.  I had this inexplicable notion that my preparation, my savings, all of that would be for nothing.  Now, given, I had expected the problem to be of a global scale rather than personal.  The collapse of the economy, or of America.  Some sort of apocalypse.  Nuclear war.  Not something as mundane - insignificant - as my early death.

More telling is an old fear of mine.  When I was young (single-digits) young, I was terrified of cancer.  Especially brain cancer.  I thought the only thing worse than your body turning against you would be your body devouring your mind as it does so.  There was nothing more frightening to me than the idea of watching your own mind - your own self - fade away.  I carried that fear long enough that that Flowers for Algernon story we've all read struck a chord with me. 

Still, that fear faded over time, such that there was none of it left by the time I got my diagnosis.  I suppose actually having brain cancer is scary enough as it is.

Wednesday, November 9, 2011

Definitely ready to feel normal again

Even though the chemo only really kicked in during the last day, I continue to feel it profoundly. 

Looking in the mirror last night I noticed that my eyes were darker than usual, even though I've had much more sleep than usual.  I haven't eaten anything in over 24 hours, a long, steady lack of appetite only briefly pierced by hunger pangs that never last long enough to address.  My "dizziness" has migrated to the left primarily, and is a true nuisance.  I was just speaking to Jill and she offered me a ride home if I didn't feel I could make it on my own.  I must really look like hell, as no one had offered any such thing since I was nearing the end of my radiation treatment.  My voice felt weak as I spoke to her.  I still feel the occasional pain along my ribcage; two multi-angle chest X-rays have shown there to be nothing of concern there, but I still feel something.  All I need is another cancer.  Even if it's something benign, that would probably mean another operation to recover from. 

I thought, given Will's immediate and intense reaction to his first cycle and my delayed reaction to my own, this would be a cakewalk.  Now I can only hope to adapt, otherwise I'll have to get used to not quite being myself for a week out of every month.

Jill already made the menstruation joke. 

The family's having Thanksgiving with my Aunt and Uncle and they'd like me to come along.  I've been dodging them - or more specifically my Uncle - for months now.  His family is kind of nosy and opinionated, and very intense, especially Uncle himself.  His mere presence makes me nervous and tense.  I guess it isn't right of me to hide forever.  Their concern is genuine, even if what they pitch isn't necessarily what I'd like to catch.  Maybe I can put in some face time and cut out early.  I have to admit, my Aunt does cook a lot better than my Mom. 

Probably because she follows recipes.

Tuesday, November 8, 2011

Turns out I'm just grumpy, entitled, and possibly elderly

In this revealing article, Jordan Rau notes the hospitals across the nation with the highest and lowest patient satisfaction rates.  I'm going to tip my hand a bit and say that I was treated in Manhattan.  Manhattan's rated in the bottom six (though that includes more than the hospital I attended). 
No one has proof why New York does so poorly, but everyone has a theory. It could be all the old, cramped hospital buildings that make patients shack up in double rooms. It could be the cranky mix of lots of poor patients in especially bad health and wealthy, entitled patients. It could be the frenetic environment of teaching hospitals with a plethora of residents and specialists poking at patients.
Well it's certainly true that the building itself isn't terribly comfortable but notice how quick Rau is to blame the patient.  In fact, take a look at the opening line: 
Not all hospital patients are alike. Some are harder to satisfy.
 Yes, that's right.  It's not that I had to drink phlegm, or that I was turned into a human pincushion, or that I never got a moment's privacy.  It's that I'm entitled, cranky, poor, wealthy, elderly, and eager to be nasty to people.  Every hospital delivers completely identical care: it's the patient that's the variable.

Why don't you try it for a while, Rau?


The boss wants us to stay late this week to make up for the time lost during the storm.  They've been good to me, so while it isn't exactly pleasant I'm not going to complain.  Yesterday I stayed until closing, an hour after usual.  There was only one other worker in my building.  I find it kind of ironic that I'm on chemotherapy yet I'm one of the only workers who can be assed to put in extra time. 

When I got home I slept for two hours, then went to bed an hour or two earlier than usual, so I got far more sleep than usual.  I'm still feeling tired and foggy today, but not as bad as I was yesterday.  Fortunate, since it looks like I'm going to stay even later tonight. 

My "short circuits" seem to be hitting me no matter where I look now.  Last night I tried my best to relax my mind, not to "resist" the strange impulses I felt.  It worked a little, but I'm thinking this isn't the kind of thing I can just think away.  I'll talk to Dr. C. about it next time I see him.

On the plus side, my headache's gone away.  That's a relief.  I'm sure I'll get it back soon enough as in my eternal struggle for better internet access, I have found that Charter absolutely does not care about me in the slightest.  They won't even let me try to install it myself, even though I've been running telecommunications systems since I was a teenager.  I'm thinking I'll try it anyway and see if I can get the mandatory installation fee refunded.  Even though dealing with Charter is frustrating and insulting, they're still better than the alternative.  They're offering 12mbps for $35/month.  AT&T charges me $50/month for a connection about 1/40th as fast.  To AT&Ts credit, it's really stable.  If I throw a battery backup on my router and modem (along with my computer, of course), I can stay online during a power outage.  Even so, I can no longer stomach paying more for so much less. 

Stay tuned for chapter 2: trying to cancel that $50/month service with AT&T.  I'm positive they won't make it easy.  Their webpage barely acknowledges it's even possible.

Monday, November 7, 2011

Oh yeah, that's what it's like.

I'm not sure if it's my cold whipping back around on me or if the chemo finally caught up with me, but I'm not feeling so hot today.

My headaches had all but faded over the last few days, then I woke up last night with a brief but more intense one.  It faded quickly and I have no idea what caused it.  It's entirely possible I smacked my head against the wall in my sleep, as it wouldn't be the first time.  When I woke this morning I felt a lot like I used to during my treatments back in August and September.  Exhausted, weak, with a minor headache.  I sneezed a little while ago and really felt it.  If it's like this tomorrow, I'm going to call Dr. C.  I don't know what he'll say.  I mean, people get headaches.  Maybe I should take some Tylenol and see how that helps.

I've noticed another symptom lately, one that's hard to describe.  It started years ago, when I tried taking Levoxyl as part of my depression treatment.  When I googled my symptoms even vaguely, I came up with another Levoxyl user who reported what she called, "brain zaps."  That's an apt way to describe it.  It was so annoying I stopped taking Levoxyl and while the symptom faded, it never entirely vanished.  Recently, during this first round of chemotherapy, it's been intensifying.  When I turn my eyes to the right (but not to the left), I momentarily get dizzy and hear a strange pulse sound in my head, like a TV tuning to a new channel.  Not static, but a brief electronic hum.  Turning my eyes all the way to the right gives me between 3 and 7 distinct pulses.  I have no idea what's actually causing it, but if Dr. C. told me something was misfiring in my brain, I wouldn't be at all surprised.  I can't help but feel like it's a tiny seizure, too weak to fully wrest control away from the rest of my brain.  It really isn't any more than an annoyance at this point.  I don't like the sensation but it would have to be at least five times stronger even just to make me lose my balance. 

So it looks like I'm not going to waltz through this 5/28 thing after all.  At least it still hasn't hit me nearly as hard as it hit Will.  Now it's just a question of whether next time will be any easier or any harder.  It'll be another three weeks before I find that out. 

Saturday, November 5, 2011

Computer Chemicals Linked to Pancreatic Cancer

Between rising rates of cancer among young people and my own history with computers, I've suspected there may be a connection between the rise of technology and the incidence of cancer.

This article over at Discovery suggests certain chemicals used in computer components (and their production) have been shown to cause cancer.  While these substances clearly are not unique to computers, it may be computer technology that has brought them into our homes.

I guess what I'm saying, boys and girls, is to try to avoid eating cadmium.  Just one of many excellent reasons you should not lick your computer.

If you're gonna do it...

Throughout life, there are always choices we must make with reluctance.  Some of these are milestones, enough that we remember them for the rest of our lives.  Not always matters of conquering fear, or overcoming pain, but simply allowing change.  In my own life, I've had a tendency to resist these choices up until I'm really ready to do them.  Then I do the hell out of them. 

When I was a child, one night I spontaneously decided I didn't want a nightlight anymore.  It wasn't enough just to unplug the thing.  I went around my room eliminating all sources of light, no matter how dim.  Covering up clocks, making sure the windowshades were fully closed...  I even blocked the crack of light under my door with a shirt.  Then I slept.

As a teenager, my parents pushed me to get my driver's license as soon as I turned 16.  I didn't feel ready.  I hated driving, and was awful at it.  I failed the driving portion of the test three times before finally passing and receiving my license.  For the next two years, I didn't get behind the wheel once.  Then when I was 18, I needed to go somewhere with my parents and they told me I should drive.  They were astounded that somehow, with no practice and no training, I had suddenly become a good driver.  I was ready for it.

So last night, I stared at myself in my bathroom mirror, and concluded that I needed to shave.  My face, mind you, as I haven't had a beard since college.  Then I noticed that some of my hair had started to grow back (ironically, only directly around the scar on the side of my head), and that the two patches in front that I never lost were starting to grow back in.  I'd been trimming them close, so that I looked like I had a severely receding hairline rather than a patchy cancer-cut.  The rest of my hair had grown to be just over an inch long.  I took up my electric razor and I shaved those two parts back down to the skin, and looked myself over in the mirror again.  I held my hand along my hairline, so that I looked bald.  Didn't look too bad, so...

Hell with it.  Let's shave the bastard.

I started out with an electric trimmer I had purchased just for the purpose of evening things out over the course of my various hair-destroying treatments.  That gave me a close, military-style trim, a buzz cut really, a little shorter than it had been after I first returned to work back in early August.  One month's worth of growth, instead of the four it had been since my operation.  It wasn't close enough, though.  I could still see a distinct, sharp line between my head fuzz and the completely hairless patches left by the radiation.  I took up the electric razor again, and trimmed it as close as I had my face.  Now, my electric razor did not like this.  It's a waterproof dealie, which was very fortunate as I had to disassemble it and clean it three times to get it to finish the job, its three blade discs repeatedly clogging with hair.  I cleaned it, and I shaved my head right down to the skin, as close as I could get it without shaving cream and an actual razor blade.  It's still not perfect, and I can still see the break between "shaved" and "bald," but it's much more subtle now.  Enough that I could go without my bandana if I chose and I wouldn't feel too self-conscious about it. 

Unfortunately it's below freezing out today, and my head is really freaking cold if I leave it uncovered.  Guess it's the thought that counts.

When I was in high school I read a short story about a young woman who had dyed her hair green.  She did this because she had just been diagnosed with leukemia, and knew she would soon lose it, so she wanted to do something spontaneous and stupid and fun with it, to see it off.  As someone who had, before my own diagnosis, gone without a trim for half his life, I can see where that author was coming from.  Keeping my hair the same is no longer an option, so I am free to do anything.  In this case I really do have "nothing to lose."

And hey, if anyone out there knows a better way to get a closer shave, please do let me know.  Depending on how things fill back in, this might be my new look.

Nothing to report on the treatment front.  I'm on day 3 of 5 and feel just fine.  My headaches have faded in their frequency and (already low) intensity as my cold has cleared up, which is certainly a relief.  Just two more days and I'm done with my first cycle.  Piece of cake.  

Friday, November 4, 2011


Round one, day 2, chemo vs cancer, FIGHT!

I feel better than I did yesterday, even after my second dose of chemo.  My right kneecap hurts a little bit, which is something I got the first time around too, nothing to worry about.  Energy levels and appetite are fine.  Last night I got a bit of a mild headache as the day drew on, which isn't too unusual as I'm getting over a cold and my forehead was pretty warm.  Still something I'll need to keep an eye on.  If I'm still getting headaches in two days I'll give my doctor a call and see what he thinks, but the MRI from last Wednesday didn't look like the cancer was big enough to cause that kind of symptom. 

I'm no psychologist so forgive me if I'm using these terms incorrectly, but today I'd like to talk about denial, suppression, and repression.  I define denial as refusing to believe something, suppression as refusing to feel it, and repression as no longer recognizing that there's anything to feel.  Some people call that "bottling up," the military calls it "compartmentalization," but either way it's yielding control of an emotional subject to a dispassionate logical side.  So far, that's how I've dealt with my cancer.  The first time my therapist met me, she said that I seemed like I was much further along in the process of acceptance than some of her other patients, who've known about their cancer for years.  Of course that's because I'd skipped over some steps.  Painful, but important steps.  I never felt anger or grief.  I've never cried over my fate or fortune.  Some people mistake this, too, for bravery.  It's not.  It's numbness.

But it isn't denial, either.  I know exactly what's happening to me, in clinical detail.  Even before my diagnosis I've always been fascinated in biology.  My average in my high school Human Anatomy course was 104%.  During study sessions my classmates would sit around me, tossing me their questions, which I could answer effortlessly in full detail, as though I'd memorized the text book.  During one session I noticed them looking at me like I was some kind of alien.  So yeah, I really understood what I was reading (internalized it, if you will), and there was a time when I was thinking of becoming a doctor.  I managed to convince myself not to, through my favorite passtime: self-doubt.

The problem is that I can only view myself clinically, in that way.  I see a process that's occurring in a patient, and I know that patient is me, but for some reason I can't feel that.  That's why I first went to see my therapist.  Not because I was so distraught I couldn't get on with my life, but because I wondering why I wasn't distraught.  I worried that eventually those emotions would catch up with me, and that I'd suffer emotionally like most cancer patients.  I wanted to confront those feelings, and deal with them on my own terms.

Except I can't.  Not because of the cancer, but because of the way I grew up.  My parents are deeply supportive of me, and have been great during this entire ordeal (for the most part).  They do love me.  Even so, they are human and are not perfect.  Same with me.

When I was very young, my mother was in a car accident.  She survived, but it did have an impact on her, mentally and physically.  She works full time and earned her Master's degree after this accident so it didn't cripple her, but it did change her.  From that point forward, my father treated her like a queen.  She could do no wrong.  Her opinions dictated reality: if Mom says black is white, black is white, and don't you dare correct her.  I was expected to be a part of this, a member of her entourage, placing her happiness above my own.  Over time that came to mean that certain opinions, certain statements, and certain concepts that upset her became forbidden.

I had, without anyone's intent or awareness, been taught not to express my emotions.  The easiest way for me to do that was to suppress everything.  Eventually I got so good at suppression, I no longer even noticed the burden of those emotions left unfelt.  I forgot they were there.  I repressed them.  All except for anger.  That, I can feel quite easily, along with a certain degree of resentment.  The only problem - other than being angry, which isn't terribly pleasant - was that I wasn't sure where the anger came from, or how to resolve it.  I've snapped at people, though never with any violence, not physically against an individual or their property.  I have said things I've deeply regretted.  Made some self-destructive choices.  Though I am typically painfully polite even to complete strangers, there are people out there whose only experience of me is as a magnificent asshole.  A mixture of drugs (taken as prescribed by a doctor) and therapy helped me get that under control, and more recently, identify its source.

I still don't know what to do about it.  I don't feel that this is the time to antagonize my parents, even if I am justified in doing so.  Even if I were to resolve things with them, that only takes care of one part of the problem.  My shell is still so old I don't feel its weight.  It's still so thick I can't penetrate it.  Not even a diagnosis of brain cancer can do that.  I've grown into it, and cannot get out, no matter how much I want to.  But it is there, as are the feelings it contains.  Old wounds that I can think about without flinching, I can speak only with shaking words and choked breath.  Emotions that I cannot feel show upon my face.  I keep chipping at the shell best I can, but remember why I want it gone in the first place: so that I may feel one of the greatest traumas that our world can provide.

It's frightening.  Every chip, every crack, I'm getting closer to a cascade of pain that is not merely a consequence, but my very objective.  It's like walking to a gallows.  I don't want to feel that pain. 

Except part of me does.  Part of me, buried deep within, locked within a prison of my own making.  And so I have a choice to make.  Do I want to suffer that agony and then let it go, or do I want to carry this burden for the rest of my life?

I honestly don't know.  My therapist does not call this sort of shell a "defense," but rather a "creative adaptation."  She once said to me something that has really stuck with me, and something that has helped others as I've passed it on:

"Normal to you, is normal."

Thursday, November 3, 2011

And we're back

Sorry for the interruption.  My area was hit by a severe winter storm (one that is apparently named Albert), so I've spent a little time getting in touch with my roots.  Like most roots, mine apparently spent a lot of time sitting motionless in the dark.  My power was restored before that of my parents so I let them come over to do their laundry and use my shower.  For my trouble I received a lint filter full of shredded tissue paper and a blast of cold water when I went to shower this morning, because my shower head was angled out into the bathroom for some truly inconceivable reason.  But enough about that.

On Monday I went to see a new oncologist, one we selected not for lack of faith in my previous one but because he too is highly skilled but much, much closer.  We figured that since the more intensive treatments were over - the surgery and the radiation - that we no longer needed to travel a hundred miles for the very best; though to be honest this new doctor, let's call him Dr. C., may well be top tier.  Certainly he's accessible, and has no problem with patients calling his personal cell number.  On top of that, he used to be my neighbor, when I still lived with my parents.  We're still going to keep the other oncologist in the loop and send him my blood test results and MRIs, but Dr. C. is now running the show.

Dr. C.'s office is in the hospital where I was born, about a 25 minute drive from home.  Their cancer center is comfortable and inviting - or as inviting as a cancer center can be - and their people are warm and skilled.  Their lab tech was excellent at drawing blood, and they processed the sample within minutes so they could get an accurate platelet count despite the tendency of my blood samples to clump.  She seemed surprised and saddened as she took my medical history and drew my blood.  She looked at my birthday and said, "you're almost the same age as me."  Then she looked at my address and asked me where I went to high school.  She thought we might have been classmates.  Unfortunately, I grew up elsewhere. 

I like Dr. C.  He's friendly and good-natured, and seems to really know what he's talking about, which I'd hope to be the case judging by his wall full of certificates and awards, including a recent one for "Best Doctor."  He ran a few basic tests for things like balance, strength and sensation, and was very impressed with my results.  He said that I'm "remarkably" stable for someone who has had such extensive brain surgery. 

But I don't like everything about him.  He said that he was highly optimistic about my case, which is good to hear but I disagreed with his reasoning.  Basically, he was going by the pathology report and not giving as much weight to the MRI.  I understand where he's coming from, that the pathology report is as solid an analysis as we have and we can't go second-guessing it, but I pointed out to him that the pathologists had never seen the cells that remained in my head.  I did not mention that the MRI seemed to contradict the report, or at least cast its results into doubt.  He admitted that yes, the reports are imperfect.  The distinction really isn't all that important; we're treating my cancer the same way we would a grade 3 anyway, with a year of 5/28 cycles at 330mg of Temodar (might as well put a name to it since it's the standard for gliomas).  Except he spoke as though we could cure it.  The "long life" language came up again.  It's a possibility, I admit, and definitely what I'm hoping for, but I still don't think he ought to say it unless he's reasonably sure that's what our outcome will be.  I saw that hope in my mother's face again.  She'd been hurt like that before, at least once. 

I'll be honest, I'm starting to hope a bit more myself.  Maybe it's because I've been doing well so far, maybe it's because I've responded well to my treatments, maybe it's even because I feel pretty good.  Maybe I really can beat this.  Maybe that's what's important.  As a doctor, it's his job to try to make me well, or as well as I can be.  Maybe keeping me as optimistic as possible is part of that.  If he's wrong, I won't be in any position to call him on it.  Ultimately I need to trust him.  He's a good doctor and he knows what he's doing. 

So I took my first dose of my first round last night.  Two 140mgs, two 20mgs and two 5mgs.  If taking Temodar is scary, taking a handful of it is worse.  I took some Zofran, then an hour later I swallowed the Temodar 165mg at a time, as I had during my radiation treatment.  Not the sort of thing I want to choke on. 

I feel fine.  My friend Will up in Canada told me that his first cycle was very rough on him, that he felt exhausted and nauseous, and even threw up.  I felt a little heavier than usual as I got up this morning.  A quick shower and a cup of coffee later and I feel pretty much like I do on any other day: a little tired, but tolerable.  Maybe a little congested as I think I'm getting over a cold, but nothing so severe so as to hold up the chemo.  We'll see how I feel by day 5 but so far, smooth sailing.

330mg down.  19,470mg to go.

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.