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?

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. 

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.

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.

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.

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.

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?

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.

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.

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.

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?

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.

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. 

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.

Maintenance

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.

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.

Little Kindnesses

You're always so polite!  You're one of my favorite customers!

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

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

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

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

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

MRI Results (for reals)

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

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

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

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

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

MRI Results

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

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

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

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

A few updates

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

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

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

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

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

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