Monday, December 31, 2012

Another Year

10 more hours and then that's 2012 over and done with, and what a year it's been.  What a year, indeed.

The world miraculously did not end, despite the prophecies of an ancient civilization and some tortured arithmetic that seemed suspiciously influenced by chemistry, if you catch my meaning.  So that was nice, though I do admit there is a certain allure to seeing how this story of us draws to a close.  Call it human nature.  We are storytellers by instinct, and all good stories have an ending, and a happy ending is not always the best.

I continue to recover from my chemotherapy.  I still feel fatigued but I don't have the random pains I used to get, or nearly so much fuzziness.  I feel creative and productive more often.  Still not as much as I'd like, but I'm not done healing just yet.  One weird thing; the other day I didn't sleep, by which I do not mean, "I slept 4 hours," or, "I slept 2 hours," but rather I did not sleep at all.  I'm not really sure why not.  I was comfortable.  I wasn't particularly stressed.  I tried to sleep for about 7 hours.  It just didn't come together for me.  I still went to work and actually felt pretty normal, if not a little unfocused.  The next night I slept fine, and the next.  Maybe it was just an anomaly.

In two weeks I have an appointment with Dr. C., where he will draw my blood and see how my recovery's coming along.  I don't expect any surprises at that appointment, as even if there's been a change he wouldn't have any way to know from a blood test alone.  I need to schedule an MRI.  An MRI, and then another, and another, and another.  I wonder how many my health insurance will cover each year.  I know that most doctors prefer to start spacing the MRIs out over time if there's no progression, but I don't really mind the process anymore.  I lie down, I get a needle in the arm, and I relax for 45 minutes.  I'd rather put up with that every two months than switch to a 6-month schedule and let a recurrence go unchecked needlessly for four months.

That's another thing I can't quite get out of my head, so to speak.  Every time I feel a bit under the weather, or god forbid have a headache, I wonder, is this it?  Has my cancer come back?  There have been times I've gone into an MRI certain that I'd soon receive bad news, only to hear the same thing I've heard after every MRI: looking good, no progression, see you in two months.

I find myself missing those weeks right around my surgery, when I was on steroids.  I felt energetic and rested, for the first time in so very long.  I still wonder if that's what it's like to be normal.  If everyone else has that refreshed, vital feeling with little more than an 8-hour sleep.  But I can't start taking them again.  I know how dangerous steroids can be, and even at the time I stopped taking them as soon as my doctor gave me the go-ahead.  Still, I can't help but wonder what I could have done with my life, had I never had cancer.  What could I have accomplished with all of that energy?  How many days have I wasted at home, due to fatigue or lack of motivation?

I'd like to make some sort of new year's resolution at this point but I have no idea what 2013 will bring.  Maybe that's the point, and maybe it's why so few people actually keep their resolutions.  No one ever knows what the future holds.  So maybe I'll start small.  Maybe I'll resolve to take more opportunities as they present themselves.  More risks.  Anything to start breaking down that bad habit of irrational caution that has held me back, a remnant from the person I used to be, with the sickness I used to have.

And in case those two paragraphs came suspiciously close together, this doesn't mean I'm going to start popping steroids.  I was thinking more along the lines of going to parties and social events.  Heading to a New Year's party tonight, actually. 

So I guess that's it for 2012.  Got to say it beat the hell out of 2011, but that's kind of a low bar.  Here's to love, luck and life in 2013, for all of us.

See you next year, folks.

Friday, November 30, 2012

The Importance of Tone

Before I begin, I'd like to direct your attention to today's XKCD cartoon.  I think the reason why will be apparent. 

So the other day I was in the cafeteria at work, making myself a cup of coffee (as is my wont), and a co-worker came in.  She'd been with the company and known me since before my surgery, though she works part-time so she perhaps didn't know me as well as some others, even though we work about ten feet from one another.  She started making the usual morning small talk, how are you, how was your weekend, et cetera.  I responded that not a whole lot was going on, went for an MRI, just the usual.  I know that for most people an MRI is kind of a huge deal but I figured everyone at work knows what's up with me, they know I get routine MRIs as part of my treatment.  It seems strange, coming from a man who writes under an alias, but I am rather open about my cancer with my friends and co-workers.  Not open enough, it would seem.

My co-worker looked to me with concern and asked, "oh?  What's wrong?  Are you OK?"  

Now, I don't expect that everyone's memorized each and every step of my treatment.  When I went off chemo, many people were surprised to hear I was still on it.  Certainly it doesn't affect their lives in any way, that I get routine MRIs.  I assumed she must have simply not known.  As casually as telling her which hand I favor, I said, "I have brain cancer.  I get regular MRIs to keep an eye on it and make sure it doesn't pull anything sneaky."

"I had no idea!," she replied, just as casually.  We chatted a bit about that, how I had no idea she had no idea, or that anyone had no idea, wondering who else was in the dark, and then we went our separate ways.  It was as though brain cancer is only serious if one speaks of it in a fittingly serious tone. 

I can't say I'm disappointed.  Those, "I have cancer" talks are really hard and unpleasant.  Definitely not the way to start a morning.  It was just so surreal to see it go over so smoothly.  It's made me think about the importance of tone, and how we communicate.  I wonder if she would have been more concerned had I mumbled, "we're out of creamer" in as miserable, hopeless a voice as I could muster.

Or maybe she thought I was making a really tasteless joke but didn't want to call me on it. 

Either way, I am left wondering who else doesn't know.  There isn't much I can do to raise awareness, if I even wished to do so.  I can't send a company-wide e-mail saying, "hey guys, just a reminder, man with cancer over here!"  I can't go around inserting it into casual conversation, hoping that everyone will react as well as that one co-worker.  I don't really want people thinking about it.  I am not my cancer.  It does not define me and it does not limit me.

I guess I just don't want to have that hard conversation with anyone.  I don't want to put them through it, and I don't want to put myself through it.  But above all else, I don't want to surprise anyone with it.  I don't want to get someone invested in me, only to feel I've presented myself falsely.  My cancer is not who I am, but it is part of who I am. 

Anyway, yes, I did have an MRI this month and it came back with no progression.  No one has said the word "remission" to me, but from what I understand I meet all the criteria.  I suppose I'm afraid to ask, should I be confronted with some technicality that means I'm not really in remission.  I did get a call from my oncologist in Manhattan concurring with my local doctor's opinion that we should stop the chemo, so that, my friends, is a done deal. 

Thanksgiving has come and gone - for those who may be unfamiliar with the custom, it's an annual feast where we Americans give thanks for all we have by stuffing ourselves stupid with rich, heavy foods - and my mom's been pretty enthusiastic about all the things we (by which she means I) have to be thankful for.  I'm not sure how to feel about it, really.  Things could be much, much worse, to be sure.  I'm not going to be as dark as to say I'm still trying to fight my way back to zero after a setback as huge as cancer, as I believe my disease has helped me to grow as a person.  Right now I'm as close to cancer-free as I can expect to ever be, given the level of technology I have available to me, but that's all I am: close.  I'm not cured.  So long as that's the case, so long as I'd trade anything for a cure, it's hard for me to feel all that thankful.  It's hard for me to give thanks that a bad situation didn't get worse, no matter how glad I am that that's the case. 

Maybe that appreciation that things haven't totally gone to hell is close enough.  I mean, dad's turkey was pretty good this year.  That's something.  Right?

Tuesday, October 30, 2012

Time for a New Chapter

I meant to write something about this on Wednesday, but wanted to give myself a little more time to process things.  Then I tried again on Sunday for reasons that will become apparent, but Hurricane Sandy had other ideas.  So now that I'm finally in front of a computer with working internet access, let me give this another shot.

On Wednesday, October 24th I had my routine pre-chemo check-in with Dr. C.  As I mentioned last time, this marks one full year taking cycles of chemotherapy, a significant milestone as "one year" was the minimum recommended dosage.  I hadn't brought it up lately out of fear that Dr. C. would have changed his mind, or forgotten about it entirely, or otherwise responded with anything but a, "sure, go ahead."  When I saw him on the 24th, I figured there was no point in dancing around the matter and asked him directly if I could stop.  He flipped through my file - now quite sizable - and casually said, "sure."

There was a little more to the discussion than that, granted, but that's how it started and proceeded along those lines, with Dr. C. giving me reasons why it would be a good idea, or at the very least, not a bad one.

So that night, I took the first dose in my last round of chemo.  At least, my last round for now.  There's no way to know what the future holds and I'm sure this is not the last I've seen of my cancer, but for the time being I am no longer a cancer patient, but a cancer survivor.  Dr. C. wants to see me in 3 months and I'll still have my regular, bi-monthly MRIs, but no more chemo for the foreseeable future.  I'm free.  That was the thought going through my head on Sunday, as I prepared to take my final dose and listened to the winds of Hurricane Sandy howling outside, drawing forth all sorts of new and interesting sounds from my poor little home.  I briefly entertained the thought of a tree falling through the roof, killing me on the spot.  It would figure, you know?

I actually got off pretty well from the storm.  I lost internet access, but my electricity and water supply held.  Or at least I think it did; on the radio this morning I heard some warnings about sewer treatment plants backing up and contaminating the water supply, but the report helpfully excluded any mention on which towns were affected.  I did wake up feeling a little nauseous this morning but that's hardly unusual.

We lost power at work but they'd purchased a shiny new generator after the last storm and were quite eager to try it out.  My normal workstation is without power, so here I sit on a laptop.  Perhaps not doing exactly what my employers intended, but something I need to do nonetheless.

On Wednesday night, near to midnight, I sat on my couch and held a letter in my hand.  Three pages long and hand-written, from a dear friend from my childhood.  One whom had helped to shape who I am today, but with whom I'd lost touch over a decade ago.  This letter had sat, unopened and sealed, on my coffee table for over a year at that point.  Every night I had looked at it, and refrained from opening it.  I don't know why.  Maybe the time and distance had made us strangers, or maybe I feared what emotions the letter might evoke.  Maybe I felt it was something I lacked the strength to deal with, or was unwilling to face even the possibility of drawing upon emotions long buried.  But as one chapter in my life drew to a close, I felt the letter an appropriate way to open the next.  I wrote back to my old friend, and haven't heard from him yet.  Seeing as his letter went unanswered for a year, I feel he's entitled to a little more time before I conclude he's written me off. 

I'd wanted to post something about Tig Notaro, but have enough respect for the sanctity of a work computer not to go digging for a link.  Suffice it to say you can find a clip of the set I am about to reference at Louis C.K.'s website, or just by Googling for her name.  Short version, she's a comedian who was diagnosed with cancer, and the very next day did a routine about it.  A brutally honest, open routine, in which you can hear her uncertainty, and also her desire to come to terms with her new reality.  It's a beautiful set and I encourage everyone to go check it out.  I'll do another post about it in a day or two, with a link.

Thank you, everyone, for taking this journey with me.  I'll continue to post, maybe even more frequently as the chemo flushes from my system and my head clears.  My story isn't over yet. 

Sunday, September 30, 2012

Still here

It's been a while, longer than I like to go without a post, and for that I apologize and have decided to throw something up here, for better or worse.  The short version is that I just haven't really had the energy lately.  I don't think it's any real sort of change and have no reason to suspect otherwise.  Maybe it's because it's a busy time of year at work and I need to put my energy into that.  Maybe I'm just tired of the grind.  Either way, my blog is not the only thing I've been neglecting.  My work, my own personal pursuits...  they've all fallen to the wayside in the face of the all-encompassing blah.  I hold on to hope that once I stop taking chemo, I'll have less trouble keeping up.  Sure, I started falling behind even before my surgery, but I had a growing brain tumor at the time.

It appears that right now, I do not.  I had an appointment with Dr. C. to start round 11 and it took him a few minutes to get over my blood results.  In his own words, they're essentially perfect.  Not for a cancer patient, but for anyone.  He had me stand up and walk around the exam room a bit, checking for coordination, and he told me that I'm doing remarkably well.  More than that, he said he sees no reason to suspect that'll change.  I still hold on to my suspicions - the minor headache that I feel right now makes sure of that - but it's still good to hear.  About as good as it gets without going into "miracle" territory.  Even so, I didn't bring up the idea of stopping chemo.  I feel like if I do, he might respond to it negatively, or say that he doesn't recall discussing that with me so long ago.  I am just one of many patients, after all.  He isn't my main oncologist anyway, so I'm not sure it's his call to make.  On the other hand, it's not either of my oncologists' calls.  It's my call.  It's always been my call.  What I'm really after is their blessing more than their permission.  We'll discuss it next time.  In the meantime, I've been shopping around for anniversary presents for Dr. C.  Maybe one for the lab tech, too.  And a box of donuts for everyone, so no one feels left out.

It's finally autumn, my favorite season, and I've been paying close attention to all the changes it brings.  Around here, it creates a lot of mist and fog, for quite a dramatic effect as I look out across the valley I can see from my home.  When the weather's just right, the fog settles in the bottom and I can still see the peaks of the hills beyond.  But it's the small changes that mean the most to me.  On my way to work I can see the ghosts of dewy spider webs spun between power lines, sometimes dozens between a single set of poles.  The spiders have no concept that those wires are more than oddly smooth branches.  They cannot possibly fathom that they have built their homes between two cords carrying enough current to burn them to a crisp a million times over.  It's like building a tree-house on the warhead of a nuclear missile.  There might be a more meaningful, significant metaphor to be made here, but I really don't feel like making it.  I don't want to attach any further significance to something I enjoy purely for its delicate beauty. 

I guess it's back to work tomorrow.  I'm going to try to get caught up.  I always do.  Somehow it just doesn't work out.  "Just make it through the day" is much better advice when you don't have a schedule to keep.  Maybe I'll feel better in the morning, and I'll manage to make some solid progress.  That happens from time to time, usually unrelated to anything I do beforehand.  I suppose drinking my bodyweight in coffee probably couldn't hurt.

Friday, August 31, 2012

The Relief of Mundane Problems

I had an awful day on Wednesday.

Stressful, long, exhausting, nigh-disastrous, its fires still burning (figuratively... I think), and infectious, it was my worst day in recent memory.  Let's start at the beginning.

It rained heavily on the way to work.  The defogger in my car hasn't worked since I last had it repaired, something I've meant to address but between work and my various treatments I've lacked the time and energy to do so.  At least, that's what I tell myself.  During my commute the ventilation blowers kicked on full blast and refused to shut off, even when I took the key out of the ignition.  Maybe the car was trying to dehumidify the interior - impossible to do, given the aforementioned problem with the air conditioner - and drained itself in the vain attempt, but by the end of the day the battery was completely dead.  Jack was kind enough to jump it for me and tried to help me find the problem, or at least get it to stop wasting power, but nothing short of unplugging the battery did the trick.  As soon as we reconnected the battery, the blowers started right back up.  Yeah, this is pretty boring.  It was better at the time, because then it was less boring and more of a tremendous hassle.

So I took my car to the local Sears, which was the only service shop I knew of that was open at the time, only to find that they don't actually do repairs.  About 30 miles wasted, since traffic forced me to take the long way back toward my home, and my usual repair shop.  Their mechanics had all gone home so I'd have to leave the car overnight and pick it up the next day.  The owner drove me home, and it was about 2 minutes from my front door when I realized I'd left my house key on my car keychain, and my spare was locked inside my house, which in retrospect is a really stupid place to ever keep a spare key.  To be fair, this had been the first time I've locked myself out of my room since my freshman year of college.

My parents had my spare spare, but were a good 40 minutes away.  As the sun set, I sat on my tiny deck and watched a spider weave its web in a tree across the way.  The heat of the day relented under a cool breeze.  None of my neighbors spotted me, which spared me the humiliation of explaining why I was suddenly such a fan of fresh air and mosquitoes.  When I asked my father to bring my key, I'd apologized so many times I lost count.  Yet as I sat there, swatting at the insects of the growing dusk, I felt as though I'd won a strange sort of victory.

I'd had a truly rotten day, but not one of my problems had a thing to do with my cancer.  Each problem was mundane and common.  That I could still drive enough to have car troubles, was a victory.  That I could still pay my mortgage such that I had a place to call home, was a victory.

When Dad showed up I apologized again.  We hugged, I unlocked my door, and the both of us went home.  It was 8PM.

I have my car back now, and it's mostly fixed with the few remaining parts on order.  It's good enough to drive for now, and the blowers are working properly again, $230 later.  Good enough to take me to the MRI I had today, then to my parents' place for dinner, and back home again.  Next week I'll bring it back in to finish off those remaining repairs.

In the meantime, I should probably figure out a better place to stash my spare key. 

Thursday, August 16, 2012

Nocturnal Admissions

The time is currently 4:46AM.

I woke up just a few moments ago, surprised to find myself an unwilling participant in my own dreams.  Not so much dreaming unpleasantly as instead quite abruptly finding myself, in my dream, refusing to keep playing along.  No longer in the mood, as it were.  Possibly by presence of mind (but more likely due to whatever discomfort had spoiled my affinity for the surreal and for sleep), I awakened and tossed about for a few minutes before realizing my uncooperative attitude had followed me.  Each position was less comfortable than the last.  I got up out of bed, and was hit by the most intense nausea I've felt in years.  As I stood in the doorway to my bathroom, insisting to myself that of all the things I was not eager to do this night, vomiting was right at the top, I wondered what in the world could be causing this. 

Tonight is the first night of my 10th round of chemo.  I know my way around a bottle of Temodar.  I'd taken my anti-nausea Ondansetron (aka Zofran) as prescribed.  I could do this in my sleep.  Once my nausea had come under control I got myself a drink of water and popped another Ondansetron.  It tasted of mint.

Ondansetron does not taste of mint.

Rather, a new allergy pill I'd purchased tastes of mint.  I'd taken them all out of their bubble sheet and put them in an old empty pill bottle, an Ondansetron bottle, but I'd taken care to cross out the name of the drug to write, "Allergy" in pen.  I'd also picked up my last refill of Ondansetron at a new pharmacy, one which used ordinary pill bottles instead of the usual, squat, over-the-counter-style bottles.  I would like to take a moment to stress how important it is to know what your pills look like, and not swallow any old thing just because the bottle is the right shape and you're pretty sure you've seen that pill before somewhere.

The time is currently 4:58AM, and I'm typing this as I wait for my first Ondansetron of the night (and morning) to kick in.  I should probably have a trash can or a bucket next to me but I don't.  That cardboard box there will have to do.  I'm already feeling better but I have no idea how this little adventure will impact work tomorrow.  I was hoping to be productive.  On the plus side, my sinuses are clear.

I'd like to end by sending support to Joan.  Some of my regular readers may have seen her commenting on some of my posts.  Her husband Duke had been battling cancer for nearly one year, and Joan had always been very willing to give support and care to his fellow patients, including myself.  Sadly, Duke recently passed away.  They had been married longer than I've been alive, and I feel that the breadth of their experience renders any words of comfort I can find as trite.  So instead, I'll say that I'm here for you, Joan.  Just as you've always been there for me.

Tuesday, July 31, 2012

Comfort for a friend

Let me tell you about a friend of mine.  Let's call him Bob.

I'll give you the short version.  I'm not sure I have the right to give all the details.  Bob has about as kind a heart as you could ask of anyone.  Active in his church, always willing to help a friend, car constantly loaded with food to donate, he was the first person to offer me a ride should I need one during my radiation. 

Recently, Bob found himself in the hospital.  His blood work was worrying.  Like, "they need to run some more tests but I think it's leukemia" worrying.  He was supposed to get his results yesterday, but he didn't come in to work.  I took that as a bad sign, and spent a few hours last night thinking of what I would say to him. 

People always use the same metaphor, when trying to comfort the dying.  "Anyone could step off the sidewalk and get run over by a truck."  It's supposed to emphasize how ephemeral life is, and how no one is guaranteed as much time as they deserve.  But if you step off the curb and get flattened, it's because you didn't see the truck.  I see my truck coming.  It's a long way off, and there isn't much I can do to get out of the way.  So no, having cancer is not like getting hit by a truck, though the point does remain that people with cancer still can get hit by trucks.  Just kind of assumed that wasn't really the main point since, well, no shit. 

So I think having cancer is more like getting tied to the railroad tracks, like you'd see in those old Westerns.  You're stuck.  Death is inevitable.  You can hear it coming.  See it.  Feel it.  It's hard to judge how far away it is, but it's clear that it is on its way, and the closer it gets the more its thunderous heart shakes your body to the core.  The more its call drowns out all other sound.  The more real it becomes.

But you don't have to focus on the train.  You can still see the clouds, and the sky, and the mountains.  You can feel the breeze and the sun on your skin.  You can smell blooming wildflowers and fresh grass.  You can listen to rustle of the trees, and the bird songs. 

And you can fight.  You can struggle against your bonds.  Maybe you'll break free, and even if you don't, there is something to be gained in the effort, if only the pride that comes with fighting to your last, and the inspiration that brings others.

Turns out Bob doesn't have leukemia.  He's still sick, but what he has is manageable.  My train metaphor no longer really applies, so I figured I'd leave it here.  I kind of like it.

Tuesday, July 24, 2012

Woody Roseland gets it

 "When staring cancer in the face, you learn who you are."  - Woody Roseland
I almost feel arrogant, offering this man my approval as if I were some sort of arbiter when it comes to thoughts on cancer.  He's been through it five times and it cost him a leg.  Still, so much of what he says resonates with me so deeply, by its truth or by coincidence: like me, he went through his first bout with another patient who had the same diagnosis, and was also experiencing it for the first time, at the same time.  Except his friend has lost his battle.  Should I outlive my friend, I wonder if I'll respond to it in the same way.  I wonder if I'll have that guilt and rage that, by the luck of the draw, someone with whom I shared a unique bond is dead while I am not.  I wonder how Will will feel if he outlives me.  The biggest difference is that Woody's friend was only 8 years old.  I consider myself lucky that Will is more my age.  We can communicate on a higher level, as adults.  That, and I can distance myself from the fact that for as young as I may be, there are always younger patients dealt worse hands.  I at least got the chance to grow up.

Woody also produced this video, aptly titled, "S#!% Cancer Patients Say."  Good stuff.

Friday, June 29, 2012

One Year

The anniversary of my diagnosis came and went without much fanfare or emotion.  It seems ridiculous, obscene even to say it was just another day back in 2011, when I learned that my life would never be quite the same again, but after being mired in the fallout of that day for a year, those feelings have become moot, obsolete, or otherwise rote.

Tonight has hit me harder.  On June 29th, 2011, a man with a ponytail glued little foam circles to my forehead.  A small child stared at me as I walked down the street.  I watched a low-resolution version of Battle: Los Angeles on my hotel room's crappy TV set.  I stared out my 16th floor window, across the alien landscape of Manhattan.  I wrote a note on my laptop, written like a letter addressed to myself.  All I could think to write was that I owed my brother a great deal.  I felt like I was writing a suicide note.  I knew that those could be my final hours.  I might die on the table.  I might become a vegetable.  In all likelihood I would be impaired for the rest of my life.  Would I even be able to read that note?  It seemed foolish to me, to think of utility.  Writing down passwords or secrets I'd memorized.  Of what use are such things to the dead or the brain damaged?

It turned out that I had no use for the note.  I remembered my passwords, and secrets (I think).  I remembered the kindness and support of my brother.  I remembered how terrible that stupid movie was, and that I slept surprisingly well that night, and that the moment I woke up in the hospital I knew where I was and why, and that I felt tired but aware, more like I'd slept hard than had a piece of my brain removed.

I never told my brother about the note or its contents.  I never told anyone.  As I said, it feels eerily similar to a suicide note.  It's hard to start a conversation about something I wrote because I thought I was saying goodbye.  Even harder to explain why my brother was the only person to merit mention.  The only thing to merit mention.   Maybe I'd wanted to write more but lacked the strength of will.  If so, then that I do not remember. 

Here I am, one year later, and oh the things I have endured.  The things I have learned.  It is a bittersweet victory: I have suffered the blades, the needles, the poisons, the cancer, and my own looming mortality for a year, but that is one less year that I have on this Earth.  One, and I do not know how many more I have.  All I know is that it's not enough, and not as many as I've a right to.

But how I have grown in this year, too.  I have drawn upon strength I never knew I had.  I have muscled through my long suffering with a smile and a joke.  I have learned what true friendship is.  I have grown closer to my family, and closer to myself.  I have examined feelings I did not know I had.  And yes, I have found my pain and sorrow, as well.  I have shed tears of frustration, a hand to my scar, feeling how this thing has marked me.  I have felt such anger against this disease, and I have allowed myself to feel that anger.  I have owned it.  I have left behind much of what was holding me back, physically, mentally, and emotionally.

I like myself now.  I'm more content, more often than I ever was before the surgery.  Smiles come easy, and I take all hardships in stride.  My memory isn't as sharp as it used to be, and I still stumble over words.  My old cynical self  would say that I'm happier because I'm not as smart as I used to be.  That's possible, I guess.  If it's true, I've gained much more happiness than I've lost in intelligence.

There are worse bargains to be made, my friends.

I wonder what the next year will hold for me.  I'd like to start dating, but old habits hold me back.  I can use my treatment as an excuse for neglecting my bucket list (and neglecting to write one) for the last year.  I don't want to have to think of an excuse as to why I've neglected it next year.  I want to ask the cute lab tech to dinner.  I want to travel.  But if I'm really honest with myself, I've lived more in this last year than I have in the decade that came before it, and I've started to break down those bad habits.  So I wonder what the next year will hold for me, and for the first time in my life, I look forward to finding out.

Thank you, dear readers, for indulging my ego over these many months.  Thank you for taking this journey with me.

Thursday, June 7, 2012

Now I'm not the sort to complain, but...

Thanks go out to my loyal readers, especially those who gave me some vacation advice.  I'm not sure where I'm going to go but I think I'll put something together at some point, even if just to have something to look forward to.  I always advocate that to other patients who come to me with questions on coping.  This is unrelated to the post title, by the way, I'm not going to complain about you guys.  Anyway, onward.

I really am not the sort to complain.  I usually trust my doctor's word and follow his or her advice, as I think it's kind of a waste of money to go to a doctor only to ignore them.  If a lab tech can't find my vein and has to dig around a bit I grin and bear it, and if they apologize I wave it off (with the arm they're not sticking) as though it's nothing, and really it isn't a big deal.  So in general I have no expectations or demands as to my own comfort or preference.  If I'm in pain I'll tell my doctor, but only so my doctor is aware of it as a possible symptom.  If I'm worried about something I'll ask a question.  Usually I won't make any demands for action.  I understand that what I'm going through is not going to be fun and sometimes I need to be brave, for everyone's sake.  I also have near endless sympathy for the sheer volume of bullshit most doctors must endure from all sides, and would not like to contribute to it any.

However, in my line of work I've learned to recognize patterns, and when the facts don't match the patterns, I start looking for reasons why.  And yesterday, that lead me to, for the first time ever, ask a medical professional to redo a test.

Last week, my platelet count was at 83,000 per microliter: improving, but still half the minimum limit on "normal."  Yesterday, they did a finger stick and it came back at 36,000 per microliter.  They asked me if I've been taking my chemo (I haven't, since the reason I'd come three weeks in a row was to see if I was ready).  Then they got that grave, pregnant silence a doctor gets when they don't know enough to tell you what's wrong, but none of the possibilities are good.

So I asked the lab tech if it's possible for these tests to be wrong.  Brief note here; I am extremely lucky that everyone in my oncologist's office is both knowledgeable and humble enough never to take a question like that the wrong way.  The tech told me that the rest of my levels looked normal so it seemed unlikely, but that she'd be happy to run the test again if I wanted.  I agreed, and this time she took blood from my arm.

This wasn't the cute lab tech that usually draws my blood, however she passed by the exam room, saw me in there, and came to sit with me while I waited for the results.  Very kind of her.  If there are any lab techs, nurses, doctors or other medical staff reading this, do not underestimate the value of simply being there for a worried patient, even if you have no reassurances to offer.

The results came back, showing a platelet count of 158,000 per microliter.  8,000 over the minimum to be considered "normal."  My doctor told me to go home and take my pills. 

I'm still not the sort to complain.  Sure, I now wonder about the validity of my results all the other times they ran a CBC from a finger stick, and I wonder what would have been going through my head right now had I not asked for a retest (leukemia.  I'd be worried that I had leukemia), but I don't blame them for what happened.  I'm not angry that I had to get stuck twice instead of just once.  I'm not going to complain about something that's necessary just because it's unpleasant.

Still, if something doesn't make sense to me, I'm going to ask questions.  Imprecise though it may be, medicine is a science.  Every effect has a cause.  As long as we can leave blame and fault out of it, looking for that cause can be to everyone's benefit.

Thursday, May 31, 2012

Not quite there yet, but closer

So it seems this whole low platelet deal isn't a one-time thing.  I guess back when I started chemo I had a healthy reserve of platelets and I've been whittling away at them over the weeks and months and finally used up all my spares, leaving me with the bare minimum (or less).  Short version is that I've had to delay my chemo again.  This time I had about 83,000 platelets per microliter, better than last time but still only about half the lower normal limit and too low to start my chemo.  They're going to check my blood again next week before giving me the go-ahead.  At least they'd better, because all these office visit co-pays are starting to add up.  If I'd known it was going to be this expensive I never would have agreed to have cancer in the first place.  Anyway, we're likely going to change my treatment schedule to 5 days on, 4 weeks off, instead of just 3 weeks off.  The chemo has worn me down.  I need more time to recover.  It boggles my mind that just two months ago they were thinking of upping my dose by about 30%. 

Work's been hard.  Deadlines are deadlines and I hate making excuses for myself, even if they're really good ones, but I've had a lot of trouble focusing lately.  I know that I need to keep working, for the money, the insurance and for the sake of my own emotions.  I just never really expected it to be like this.  You ask someone, what would they do if they knew they didn't have long to live.  No one ever says, "well gee, I suppose I'd keep working a full-time office job."  I'm one seizure away from that no longer being an option.  Of course that seizure would end a lot of other things as well, including the sense of freedom and independence I get from being a mostly-functional adult with my own car, my own keys, and my own home.  I'm one seizure away from being a kid again, but I don't want to go back there.  I just wish I wasn't stuck in this limbo, this constant state of "quasi-dying," where sickness and despair makes it harder for me to work but work makes it possible for me to have anything other than sickness and despair.  If this had just hit me a few decades later, maybe I'd have enough in savings for an early retirement.  As if that's the only reason to wish cancer had waited a while longer.  The other day a co-worker of mine told me I was lucky to be fighting this while I'm still young and strong.  I couldn't help but sarcastically reply, "yeah, it would have sucked if I didn't get cancer until my fifties or sixties."  He admitted that yeah, that was a dumb thing for him to say, but I reassured him that I knew what he meant and appreciated the sentiment.

Over the weekend I visited my parents to celebrate my recent birthday (I should probably update those "29s," but for some reason they all look so much nicer than "30s").  It was stressful, to say the least.  They invited over a few other relatives, including some that are a bit too high-energy for me.  Strange, active people.  I put on a brave face and soldiered through it, for my mom's sake rather than my own.  I felt cornered, in part due to my position at their too-small table in their too-small kitchen, and also because I was the center of attention at a party better suited to someone a third my age.  By the end I'd had enough.  Over the last year I've developed a far greater capability to withstand discomfort, but I've also lost a lot of patience for utter nonsense.  I think there was supposed to be some sort of puppet show but I politely excused myself and slipped out to have a moment to rest.  I felt beyond exhausted and had trouble keeping my thoughts straight.  I had trouble forming opinions, and articulating them.  I didn't feel I was safe to drive, so I spent the night on an uncomfortable air mattress on the TV room floor.  My brother and his wife were using the bedroom I'd used during the month after my surgery, when I'd stayed with my parents.

I don't get to see either of them often enough.  My brother isn't an outwardly emotional person.  He doesn't like physical contact, or expressing things as scary and dangerous as feelings.  He shows his affection in other ways, and over this last year he's been there for me in every way he could, given that he lives half-way across the country.  We'd kept in touch through e-mail but this was the first time we'd met face-to-face since before my surgery.  I know that it must have been emotional for him.  I wonder what he thought I'd become, and how close I was to his expectations.  Did he feel relief that I am so close to what I used to be, or sorrow at the significance of my shaved scalp, and that scar over my brow?

He, his wife and I spent some time together.  That's all I'd really wanted.  Not some party with loud relatives, or "events," or "activities."  I just wanted to be with my brother and sister-in-law for a while. 

Maybe it's time for me to do something other than struggle for adequacy.  I can't retire, but I can take vacations.  That sounds like the sort of thing a 30-year-old does from time to time, right?

Thursday, May 24, 2012

Chemo sucks (finally)

Sorry I've been a bit absent as of late.  It's been busy at work and to be honest, I just haven't wanted to think about having cancer for a while.

Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.

How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.

The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.

I've always hated math.

I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer.  It's about a group of NYC detectives.  It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients.  He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated.  Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings.  I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.

It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience.  Worth a watch if you have Netflix streaming and nothing better to do.

Friday, April 13, 2012

Testimony from a Brother in Arms

I saw this over on BoingBoing, a beautifully written account about the latest in a line of surgeries to cure a talented man of an abdominal cancer that threatened a "radical penectomy," one of the most horrifying procedures known to science.  He was treated at the same facility and I, by a man whose name I recognize, and spent some time in a hospital I remember on my darkest, coldest nights.  I'd recommend it to anyone who has found my own account at all interesting for whatever reason.

I've thought, from time to time, about how brain cancer stacks up to other cancers.  Mainly whether it would be better to have a more embarrassing, more survivable cancer.  Brain cancer is, relatively speaking, pretty dignified.  Despite its high fatality rate, it's more akin to growing old before one's time.  Rectal cancer or urethral cancer tend to be more survivable (though are still extremely serious, of course), but I shudder to picture the trials patients of those terrible diseases must endure.  A "radical penectomy" is a real thing, and a man can live without a penis much more easily than he can without a brain.  At least, physically. 

Anyway, it's good to hear that Mr. Dery appears to have dodged that bullet with his member intact. 

Monday, April 9, 2012

My World, My Mirror

I have always felt a sort of connection to the natural world.  Over the past year, our state has been lashed by storms of unprecedented strength, shattering our characteristic forests and coaxing our citizens to further trim back what growth survived the wind and rain.  Derelict buildings, once masked by foliage, have started to emerge from the thinning woodlands along our streets.  I cannot help but think of my hair when I see familiar patches of forest, cut back so drastically I no longer recognize them, save for the many stumps. 

But I also have always felt a strange attraction to derelict structures.  They resonate with such stark, unashamed truth: this is what we were, and what we shall be.  Decaying, skeletal, a monument to our accomplishments and comfort but victim to the natural forces that were here before us and will remain after us.  I have always wanted to go exploring in one but know that that's both illegal and dangerous.  The former doesn't bother me much any longer, boyscout though I've been.  The latter makes me want to bring someone, so as not to go alone.  I do not know if I know anyone I could recruit for such an undertaking, but that is the only way to really know a derelict.  I pass an old house every day, on my way to and from work.  Its windows are open, some broken, some missing entirely as if gutted from the structure.  Dead vines lace across its bone-white facade, like black arteries through adipocere.  I want to go in.  I want to see how it was left, and wonder to myself, what story played out here?  Who was the last person to touch this discarded object, or that?  Did they know they would never return?  Did they regret not bringing it with them?  What were the last words spoken here? 

Above all, I am most connected with water, and perhaps that is why I cannot tolerate the intersection of derelict and water.  When I was very young, I couldn't stand the sight of something artificial obscured by the murk of a lake.  I remember seeing the ladder to a dock within the pea green water, light streaming around it, shadows reaching down into the darkness below.  I always imagined there was something down there, something metal and jagged and wrong, waiting to reach up and grab me.  I had to steel my nerves to swim over that dark water.  Even after I dove off that dock, and swam all the way down to feel the slime and mud at the bottom, 20 feet below, I still avoided the chains that moored the dock in place.  Then one year, I was nearly a teenager at the time, I went to the lake for a swim.  The other swimmers looked like there was something wrong with their skin.  Tiny, thin black lines, like hairs, all over.  They were all lined up in front of a hose, which was used to cleanse their bodies of this strange phenomenon, of the sludge that clung to their body hair.

Toxic sludge.  The lake had been poisoned by runoff. 

Another place miles away, the only natural spring I've ever seen.  I remember the natural stone pool into which it flowed, crystal clear.  The water was so pure, and so delicious.  It isn't, any longer.  It, too, has been poisoned.  

Fitting, then, that I too have become poisoned.  I wonder if I will ever be pure again. 

I know what it's like to drown.  I don't mean that metaphorically.  I mean that I have struggled for breath with all my strength, and found my strength lacking.  I have felt my lungs fill with water, and my body go limp.  I remember the incredibly clarity of realizing that I am about to die, and the peace of acceptance.  Then the weight on me lifted, I pushed to the surface with my last ounce of strength, and I coughed up two lungs' worth of pool water. 

Can't say I'm disappointed with how that turned out, but that calmness still haunts me.  If there's a moral to this story, I need some more time before I can see it.  Unless it's just that "Let's Drown Knightly" isn't a great pool game.

MRI tomorrow.  Wish me luck, boys and girls.

Thursday, March 29, 2012

Losing my Winter Coat

"Have you been shaving your hands?"

A question of profound dignity and gravitas, it was asked, as so many others, over chicken soup at my parents' house, and by my mother.  A little background: ever since I became a teenager I have been, technically speaking, a pretty hairy bastard (...ladies).  Not like wolf-man or Chewbacca hairy, but through a mix of genetics, heritage and skin care choices, hairy enough that had you seen me and someone were to ask you to make a statement on the hairiness of that fellow, you might use terms like, "fairly," or "relatively," or "that guy should probably shave his hands."

However, I had not, nor have I ever shaved my hands, nor are they baby-smooth at this very moment.  Still, my mom was correct in her assertion that I am not as hairy as I used to be.  What body hair I do have is thinner, shorter, lighter and more sparse, such that I am probably now in the, "eh, I guess" category of hairiness, rather than the "oh yes indeed" category I had long occupied.

I hadn't noticed the change before then, honestly, unless you count my concern over my eyebrow, which leads me to believe I'm losing hair all over.  It would probably be pretty distressing to me had I maintained any delusions of keeping my hair, but as I haven't and shave it with the same electric razor I use on my face, I hadn't noticed any change there.  My eyebrow seems to have stabilized now, so if I'm becoming slightly less of a hairy bastard due to my chemo then I'll just add that to the perks of having brain cancer (it's a short list).

Speaking of chemo, I just started round six last night.  I'm pretty ready to stop taking this stuff.  I'm tired of spending half of every month exhausted and foggy.  I'm tired of dealing with prescription delivery services that screw up, then screw up again when they call to inform me they screwed up the first time, so that I get my pills just hours before I need to take them no matter when I call in my order.  Sick and tired of being sick and tired, blah blah blah.

But hey, at least I'm not a yeti anymore.

Thursday, March 22, 2012

What's the protocol for this?

I'd like to say that I haven't posted lately because I've been very busy but that's only a half-truth.  I did have a lot on my plate, but I wasn't picking at that, either.  Instead I was staring at my plate, wondering why it kept piling up and how much longer I'd have to wait before it magically resolved itself.  It didn't.

I used to wonder if this kind of self-destructive behavior was rooted in questions of self-worth; if I was trying to sabotage the good in my life because I didn't feel that I deserved it.  I'm not sure it's fair to pin it all to my disease either.  The truth probably lies somewhere in between, as with most things.  My last round of chemo hit me harder than the previous (though I think that has more to do with how hard I was pushing myself than my body simply reacting poorly) and I remained mired in a fog for weeks.  I wanted to work but I couldn't.  I felt physically unable to put words on the page and when I forced myself, the result was terrible and embarrassing.  Nothing I'd want anyone to actually read, never mind purchase with their hard-earned money.  Or, you know, department funding.  Whatever.  Thankfully my boss is patient and understanding enough to help me find solutions rather than point out faults, and, when necessary, light a fire under my ass.  I've found my voice again and cleaned off most of my plate, so I felt it was time to check in.

I'm faced with a new question this morning.  The president of the company had another sort of cancer when he was younger and feels that this is a point of connection between us, which is fine.  His variety wasn't quite the same as what I had but I'm not going to turn down sympathy and compassion from the man in the big chair.  This morning he sent me an e-mail on a new "cure" for brain cancer.  It's a sort of supplement called "essiac tea."  Well, he's the thing.  Essiac tea does not cure any cancer (surprise!).  In scientific trials it was shown to have no effect on cancer whatsoever until you get to large enough doses... at which point it may accelerate tumor growth or flat out kill the patient.  The FDA has described it as a "fake cancer cure" and Sloan-Kettering has advised patients to "avoid" it.  So when my president says, "it couldn't hurt," how do I respond?

I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again. 

Anyone else have any similar experiences?

Wednesday, February 29, 2012

No News is Good News

And good news is good news too.

I haven't had a whole lot to report lately.  Things have been pretty quiet and I rather hope they stay that way.  I guess that's just how this stage of treatment works; things are either boring or bad.  Given the choices, I'd prefer boring.  It'd be nice if I could try out one of those new treatments even if only for something to write about.

I did get a call from my neuro-oncologist in Manhattan with a bit of good news.  He and his fellow took it upon themselves to go over my MRIs since the end of my radiation treatment, pixel by pixel.  They're in agreement that my cancer has not merely been stable, but has not changed in the slightest.  They are increasingly of the opinion that the two dots of enhancement that show up on my MRI are actually just scar tissue, which I've got to say would be pretty awesome.  So far that doesn't equate to any sort of change in my ongoing treatment, but they say if there hasn't been any change by October we can discuss ending my chemotherapy early.  That wouldn't quite be a confirmation that I'm cured, but it's about as close as I can get.  I'll take it.

In other news, the good people over at Cancer Forums have offered me a position as a moderator in their Brain Cancer section, and I have accepted.  To anyone who hasn't taken a look yet, it's a great community that offers support, advice, networking, and even just a sounding board for all patients of all kinds of cancer, as well as their friends, families and caretakers.  The stories told on those boards are honest, sometimes sad, sometimes inspiring, and I am honored for the opportunity to help maintain the level of quality that brought me there in the first place.  I've made many friends through my participation in the forum, including regular posters, other moderators, and the occasional individual who has contacted me privately for advice.  I like to think that maybe I've helped a few people along the way.  It's a great resource and I would recommend it to anyone.

Happy Leap Day, everyone.

Monday, February 13, 2012

MRI Results and Other Stuff

Had another MRI last week and got the results back: no change.  Still stable.  I find myself thinking about how nice it would be to get a little improvement but I can't really complain about a lack of progression.  I've actually felt pretty good lately.  My mind's felt clear and sharp, and I wonder if my brain's started rebuilding some of those old connections that were so unceremoniously severed or cooked months ago.  If we have any linguistics experts in the audience it might be fun to chart my vocabulary over the course of my blog (linguistics experts tend to have an unusual definition of "fun"). 

I've been chatting with my friend Will again, the one in Canada, and he only has a few more rounds of Temodar left before his doctors cut him loose.  He'll still get regular MRIs and whatnot, but that will be the end of his treatment.  It's caused me to wonder what that's going to feel like.  My NO told me that I'm going to be on 5/28 cycles of Temodar for one year, by which he means two years.  Maybe it's the kid in me but "two years" still feels kind of like, "forever."  Like I will always take Temodar for five days out of every 28, for all perpetuity (having fun yet, linguists?).  There will come a day when I will probably stop taking Temodar.  I imagine that will be quite frightening.  The chemotherapy is the only thing I'm really doing to fight my cancer.  If I stop taking it, will that mean I'm no longer really fighting it?  What if it starts to grow again, once the chemo is completely out of my system? 

I know these thoughts aren't restricted to some point months and years in the future; it's entirely possible that my cancer could start growing again right now, regardless of my treatment.  It's also likely that after two years, the risks of continuing chemotherapy would outweigh the benefits.  The people who make it seem to think so, and that's a company that would absolutely love to keep selling me pills for as long as possible.  It gets back to bravery versus endurance.  Right now, I'm enduring my treatment.  What happens when there's no longer a treatment to endure?  I guess all I can really do is hope there's something new for me to try by then, perhaps that TTF thing I linked earlier in the month. 

I've been playing Kingdoms of Amalur: Reckoning lately.  It's a pretty neat game, but one of the core elements of the setting is that everyone has an established fate, and there's an order of individuals who can read that fate and tell people how they are going to die.  They develop the idea pretty well, to a point where there are a lot of familiar thoughts and words.  Like a father, debating with himself over whether or not to tell his family that he will soon die, and whether it is selfish of him to not want to see them suffer with that knowledge.  The story of the game revolves around the fateless protagonist, who, by virtue of their blank destiny, can alter the fates of others and save lives that were not meant to be saved.  Maybe once I'm done with chemo I'll keep an eye out for people with pointy ears and giant swords. 

Then there's God Bless America, another movie about cancer, specifically brain cancer, specifically how it's completely, totally 100% lethal.  It's used as a typical, "nothing to lose" character trait that drives the plot, wherein a brain cancer patient goes on a rampage against vapid American pop culture and also he picks up a teenaged girl somewhere along the line for some platonic and non-creepy reason.  A plot like that doesn't really hold up to close examination (why kill someone when you can just, you know, move away from them?) so I imagine it's more about catharsis than anything.

I still haven't seen 50/50, but have been assured that it makes having cancer seem like a totally awesome life filled with casual sex and frequent naps.  Guess I'm half way there. 

Thursday, February 2, 2012

Smooth Sailing

I had a visit with Dr. C. yesterday and got the all-clear to start my chemo.  Not a whole lot has changed since last time.  My blood counts are still great, I'm still tolerating the chemo well, no particularly alarming changes.  All the same, I'm scheduled for my bi-monthly MRI next week just to make absolutely sure everything's behaving as it should.  Except, of course, for that pain in my side.

Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was.  He concluded, with a reassuring confidence, that nothing's wrong.  He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain.  He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about.  The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise.  It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area.  Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease.  I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal). 

I feel confident in his skill as a physician, and in his diagnosis.  I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan.  I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations.  Even if the intermittent pain never goes away, I can live with that.  Just so long as it's not something we need to address RTFN.

Wednesday, February 1, 2012

Hope, Fear, Integrity and PR

Lately I've had cause to spend a little time thinking about alternative treatments.  Not for myself, but because I've been asked for my opinion about one in particular.  I'm not going to rail against them again as I've made my stance abundantly clear: they're harmless at best and criminal at worst.

Rather than sit here and fume about the cruelty of these self-proclaimed "renegades," fighting the "corrupt mainstream medical conspiracy," I've wondered why they seem to get so much traction.  I think it's more than simply offering a cure to the desperate, in part because the individual asking me my opinion seemed to already have a quite skilled doctor.  From what I understand of this patient's diagnosis, their prognosis is about as good as it gets when it comes to brain cancer.  Low-grade, very little enhancement, no progression...  Controlled.  Even so, they came away with the impression that their doctor told them to go home and quietly die if they so please.  Their doctor may be skilled, but not terribly personable.  They were so frightened they didn't want to get a second opinion out of an unwarranted certainty that the next doctor would give them even worse news, or insist they go through radiation or chemotherapy.  So they asked me what I thought about Burzynski.  And I told them.  At length.  I was less than complimentary and at one point I think I may have wished cancer upon Burzynski himself. 

That kind of heat is pretty rare from me, but I'd like to think it came from a good place.  I was not angry at Burzynski for lying (I mean, I am, but that's not where I was coming from at the time).  I was worried about the other patient, and that they might put their health at risk chasing a false hope even though - as shown by yesterday's post - there are plenty of real reasons to have hope.  I was worried that Burzynski's unsupported optimism would overcome their doctor's unwarranted pessimism. 

So what is it that makes a false cure more appealing than a real one?

For one, lies are a lot more flexible than truths.  Everyone peddling an alternative medicine can twist (or outright forge) figures to make their product look like a miracle cure.  It's easy to say that their treatment works so well that it constitutes an existential threat to modern medicine itself.  Crying conspiracy is a very useful tact: any lack of evidence or any evidence to the contrary can be dismissed as part of the conspiracy.  We see it in politics all the time.  Meanwhile, legitimate doctors with legitimate treatments are constrained by these little annoying things we call "facts," and when it comes to brain cancer, the facts aren't too pretty.  They used to offer no real hope at all.  Even today, that hope is slim and preliminary.  Except it's real, and that's the important part.  

There's also the matter of what drives people to become con artists, what drives people to become doctors, and what makes someone a leading con artist or a leading doctor.  The most famous con artists are the best liars.  The ones who make the biggest promises, who assemble the best false evidence, and the biggest followings of supporters who are so desperate to believe, they will fight that con artist's battles for them.  I'm sure if Burzynski's followers find this post we'll see an excellent example of that.  I sometimes wonder if the cons believe their own con; if they are not liars but are simply deluded.  I'd really like to think that.  But whether they are lying to themselves or to others, the hallmark of a great con artist is appealing to their target.  They are salesmen.  Selling is what they do best.

A medical researcher has no such aspirations.  They deal in facts and speak factually, even when the facts seem grim.  They build a career by doing good science, not by sales figures.  They build a reputation among other scientists, who know that reality is not determined by popular opinion.  People who know that, if every man, woman and child on the planet holds a false belief, that belief remains false.  That 7,000,000,000 people can be wrong.  Sure, bedside manner is important and I've found that the best doctors not only know their facts but can also relate them to their patients, but a doctor who gives you the wrong information in a gentle way is not a good doctor.  First and foremost, we want our doctors to be right. 

Even when the truth is terrible.

Tuesday, January 31, 2012

Bill Doyle - NovoCure's Tumor Treating Fields

Here's an interesting clip from TEDTalks describing a new treatment for brain and trunk cancers that has just completed clinical trials.  In trials, GBM4 patients whose cancer had recurred after they'd received surgery, radiation and chemo wore this device instead of taking another round of traditional treatment.  While it did not extend their life expectancy beyond that of the control group, it kept them alive just as well but without any side effects.  No nausea, no fatigue, no chemo fog... just a silly robot hat.  A small price to pay. 

Bill Doyle cites one patient (whose results appear to be atypical), who was given three months to live.  Within one year of using TTF treatment, he no longer showed any enhancement on his MRI.  Five years after starting his treatment, he's still alive, without side-effects and well enough to go to work. 

From what I understand, the treatment involves wearing a device over the afflicted region.  It is totally non-invasive, and uses an electrical field to suppress cell reproduction.  Even though it's been proven to work on its own, Doyle says studies are ongoing on how to best use it in conjunction with other treatments.  Rather than replace chemotherapy and radiation, it could dramatically improve their effectiveness. 

These are some exciting times, my friends. 

Monday, January 23, 2012

The Slippery Slope

Well, not exactly a slope, really.

This morning as I walked to my car I stepped on some black ice and slipped.  There was nothing around on which I could steady myself.  Nothing firm of which I could take hold.  Just me, and the blacktop, and my fleeting equilibrium.

I didn't fall.  I caught my balance the old fashioned way, that intricate and instinctive feat of coordination that allows us to thrust our center of gravity back in line with our bodies and remain upright.  This isn't the first time I'd slipped and managed not to fall, nor would it have been the first time I'd slipped and ended up on the ground.  It was the first time I'd done either since my operation, and so I immediately recalled my first meeting with Dr. C.  That was the one where he was genuinely surprised that I was so stable on my feet after all I'd been through.

I started to wonder how things could have played out.  What if I'd fallen?  I'd probably have fallen backward.  Would the jarring motion of the impact have done anything?  What if I'd hit my head?  I would have hit the back, rather than the weakened front where I had my resection.  What would I do if I felt fine?  Would I pick myself up and go to work?  What would I do if I didn't feel fine?  Should I have gone to the hospital either way?  Is that who I am now?  The sort of person who can't even deal with a fall on his own?  All of my various neurologists asked me if I'd ever fallen and it seemed like such a ridiculous question, akin to asking if I'd ever sneezed.  Of course I had.  What of it?

But I kept coming back to Dr. C.'s reaction, and the implication that I was unusually stable.  Were I more typical, would I have been able to catch myself like that?  Or if I want to get philosophical (possibly spiritual?) about it, was I supposed to fall?  Was I supposed to spend today in the hospital?  Was I supposed to be forever changed and further disabled?  Was I supposed to die today?

Hell of a thought for a Monday.

My past self would have taken the fall, picked himself up and gone about his life.  I admit that had I fallen, I likely would have done the same even if I didn't feel quite right, in the hopes that the feeling would go away on its own over time.  I know the real warning signs to watch for, don't I?

None of that mattered because I didn't fall.  I got into my car and I drove to work, albeit with a little extra care having confirmed that the roads were icy.  I felt good having reaffirmed that I was still capable of such a complex automatic response, but unsettled about what may have happened were I not.  Chances are, there will come a day when I slip and fall.  I wonder, what choices shall I make on that day, and how shall they serve me?

Laura, if you're reading this and didn't see my response to your comment, I'd be happy to answer any questions you might have.  You can reach me at knightlyqblowguns(at)hotmail(dot)com.

Friday, January 13, 2012


There are two things that particularly suck about this stage of cancer treatment.  Aside from the whole "having cancer" thing, that is.

First, very little is actually happening.  I see Dr. C. once a month.  Ever other month it's MRI time.  Generally speaking, there's nothing to report.  It's like watering a plant.  Plant still alive?  OK, great, don't forget to water it again later.

Second, I have to wonder if every slight ailment or discomfort is some horrible disease or metastasis, and it's not hypochondria because I do have brain cancer, which is a horrible, potentially metastatic disease.  It usually doesn't spread to other parts of the body but "usually" is not "never," and 29-year-olds "usually" don't have brain cancer in the first place.

Case in point, that little pain I mentioned a while back, the one I feel under ribs.  It hasn't gone away.  At first I thought it might be due to the chemotherapy, as unexplained pains are a common side effect and I've had two sets of X-rays taken of my torso, one by an oncologist and one by a pulmonologist.  Neither saw anything of concern.  ...except I feel something that concerns me.  There's something causing this.  Lately I can feel something pressing on my ribs when I stretch, and I wonder if the right side of my abdomen isn't just a little bit distended along my flank.  It could be my mind playing tricks on me.  Or it could be another tumor.  Or maybe a blood clot.  Or an organ swollen for a more benign reason.

That side has always been a little odd.  I lost some weight in college and when I took a deep breath I could feel something rubbing against the bottom of my ribcage, like it would naturally fall on one side but my inflated lungs would push it to the other.  I still get that sensation sometimes.  Sometimes it would "catch," and I'd get a stabbing pain if I tried to inhale too deeply.  I always thought that was normal, like a "stitch" that some people get.  It would always go away on its own pretty quickly, as if it were a muscle cramp.  Who knows, maybe that's what it was.  Maybe it was unrelated.

But I take solace in one simple fact: my bloodwork is rock solid.  Nearly perfect.  Not just in terms of platelet count and the like, but on my CBC I fall directly in the center of normal on all readings save one, which is still within normal bounds.  Were something impeding the function of any of my gastrointestinal organs, that would show up in my blood.  The question is, would all of it show up in a standard CBC?  After all, they can't tell everything from that little test strip.

Maybe I'll ask for a full course next time I see Dr. C., just to be sure.  Either way, I'm going to get to the bottom of this.  I can feel something there, regardless of what the X-rays show.  I don't know if it's swelling, or a cyst, or a tumor or what, but I need to figure out what it is, and take care of it if it's going to be a problem.

I got lucky when the neck thing turned out to be nothing but a cheap mattress.  I hope my luck holds out.

Friday, January 6, 2012

ICT-107 GBM4 "Vaccine"

Speaking of new tools...

The approach with this particular vaccine is unique, Lesser added, because it is targeting the antigens or proteins that are present on glioma stem cells, whereas other treatment approaches mostly target differentiated tumor cells.

"The antigens used in this vaccine target the tumor stem cells -- the handful of cells that keep the tumor alive and dividing. Most of the cells we kill with standard treatment are likely not the ones driving the tumor growth. If the stem cells aren't targeted, they keep generating more tumors."

According to the biotechnology company that is conducting the trial, the Phase I clinical study of ICT-107 in GBM involved 16 newly-diagnosed patients who received the vaccine in addition to standard therapy -- surgery, radiation and chemotherapy. Those patients demonstrated a one-year overall survival of 100 percent and a two-year survival of 80 percent. Although only a small number of patients were treated, these results compare favorably with historical 61percent one-year and 26 percent two-year survival with standard care alone.

They're also working on a version for lower-grade gliomas.   Sounds like it's not perfect and 16 patients is pretty close to the line between "data" and "anecdote," but this just might be the answer I've been waiting for.  I guess with this - as with so much else - we will have to wait and see.

Thursday, January 5, 2012

Eric Kostelich on Chaos Theory and Brain Tumors

Interesting interview over at Boing Boing, about chaos theory, forecasting seemingly chaotic systems, and how that applies to brain cancer.  Not the most pleasant read for someone with brain cancer as they take special care to emphasize how deadly and untreatable it is, but fascinating as long as you don't expect them to pull any punches.

It seems that Kostelich thinks with enough research we could forecast what a cancer will do in the same way we forecast the weather.  That could have a profound impact on "accuracy-by-volume" treatments like radiation, as instead of treating everything within 2cm of identified cancer they could only treat the area where the cancer's expected to spread next.

My understanding, and from personal experience with a family member, is that you're right, this isn't going to cure cancer in general or glioblastoma specifically. But one of the real goals of treatment is to help patients live as well as possible for as long as possible. The age of highest incident for the type of brain cancer we studied is between 40 and 65. If this result allows you to live two months longer than you otherwise would maybe that makes the difference between seeing your daughter get married or not. We can't prevent the inevitable, but we might help them live better or longer. If we can develop good enough mathematical models and be able to tell patients that going through another round of chemo isn't likely to help, then they can decide to spend that time with family instead of in the hospital. That's beneficial in it's own way. - Eric Kostelich

Can't argue with that.

Still, if they get as good at forecasting cancer as they are at forecasting weather, I think the best they could do is tell me I probably don't have cancer and that my core temperature will be in the 90's all week.

Monday, January 2, 2012


Without fanfare or any particular note, 2012 arrived at the Blowguns household, and nothing - save the clocks - changed.

I've never been a big fan of New Years.  I like it better than the "holidays" as no one really argues about New Years.  We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content.  I was at my computer and noticed that it was 12:06AM.  That was my celebration.  No alcohol.  No company.  I didn't even watch the ball drop.

I did find myself thinking about resolutions.  They seem so trite, now.  Who cares if I lose 10 pounds?  I have brain cancer.  Who cares if I earn a raise at work?  Brain cancer.  All of the things I'd love to change are outside of my control.  I can't resolve to be cancer free.  I can't even resolve to have no progression over the next year.  I can't resolve for science to find a cure.  I can't resolve to be the object of divine intervention.  I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not. 

To be honest, I never really did the resolution thing.  I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve.  Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week?  That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer.  I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date.  That said, I rarely made changes in my life.

So I think I'm going to make a resolution this year.  I resolve to make it to 2013.  There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013.  In 2013, I can worry about making it to 2014.

I continue to have good days and bad days.  I've noticed more and more holes in my memory.  Little flashes of familiarity floating, unattached.  I struggle to place them in my life and find their origin but I often fail.  When I succeed it's a small victory but I can't help remember a time when this was effortless to me.  I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed.  These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.

That aside, my vocabulary seems to be recovering.  On my good days I'm quicker with my words and they flow more naturally.  It's less of a struggle to write, which is an indescribable relief.  I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.

I'm doing all right emotionally.  No major breakthroughs nor setbacks.  No waves.  I haven't worried about it much as I have other things to deal with.  Lately I've been hanging around the Cancer Forums (linked to the right).  The support is nice, but what helps me the most is when I can help someone else.  If I can ease their worries, I can ease my own.  Maybe it's a bit like comforting my mother.  Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.

Maybe I feel numb because I spend so much time alone.