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.