The One with the Politics

Back in high school, my history teacher always used to say, "war is a game that old men play with young men's lives."  I forget who he was quoting but that's not important.  Regardless of the source, it feels apt given everything going on in Washington today.

Now I'm not going to get all political here.  This is not the time nor the place for partisan debate.  How I see it, we have a bunch of people (of both parties) who are wealthy enough that they could retire in luxury for the rest of their lives and pay for the best healthcare in the world out of pocket playing a game of chicken, where all the have to gain is some illusory and temporary sense of power.  The price, however, is the well being of their constituents and employees.  They have no say over this government shutdown, and they are the ones who now suffer for it. 

Even so, suffering is one thing.  Death is another.

One of the government facilities currently shut down is the National Institutes of Health, or the NIH.  Senate has blocked a House attempt to give NIH an exemption; after all, it's not nearly so important as catching one's flight on time.  There are people who cannot wait for the government to get its act together and grow up.  There are people who had intended to turn to the NIH as their last hope.  I'm talking about the people who are so sick that they're willing - and legally allowed - to try anything, no matter how new or experimental, because they have no alternative and they're running out of time.  So while the Donkeys bray and the Elephants trumpet and nothing gets done, long-suffering people are denied their last, albeit small hope.


In other political news, Obamacare.  That's about all I really know or understand about it.  I've tried to educate myself and I've even spoken to an insurance representative about it but the only conclusion I've come to is that no one knows how this thing is really going to play out, and anyone who claims otherwise is probably selling something.  I'm going to keep operating under the belief that I can get insurance through work and that it's going to keep getting more expensive. 

And that's all I have to say on matter.

I had my MRI last week and met with Dr. C. a few days ago.  Still no change, though this time the MRI technician wrote that there was no change in a slightly different way (something to do with how they see no evidence of neoplasm but can't rule it out, which has been the case for about two years now).  Dr. C. had an addendum added to the report noting that yeah, nothing has changes, the MRI guy was just being weird.  As Dr. C. and I chatted, the topic of conversation came to compare me to other men of my age, to which I said that most men my age don't have brain cancer.  He stated, without hesitation, that neither do I.  I corrected myself to say a "history" of brain cancer, but I found his objection telling and reassuring.  We never really pinned down what my current status is.  No one ever said "remission," though that might tie back to the MRI and the inability to scientifically rule out new growth, no matter how many sets of eyeballs look at how many pictures over how many months and conclude that those little bits of enhancement are nothing but scar tissue. 

I feel like I've found a new normal for myself these days.  My memory isn't as good as it used to be, nor is my vocabulary quite so available, but I now find myself somewhere in the gap between recovery and adaptation.  I'm not 100%, but I'm used to not being 100% and I've found ways to cope.  It's really the memory problems that bother me the most.  Solving a problem can feel like fumbling with puzzle pieces, whereas once I had them all laid out before me, clearly defined and ordered.  Now, when I say a problem I'm not talking about minor things like tying my shoelaces rather than more complicated tasks, like fixing a broken computer.  I know that such things are beyond many people who are perfectly healthy but I'm not content with being another of the many when I have grown so accustomed to living in my own mind.  When I draw a blank like that it can be frustrating but it isn't crippling or frightening.  It doesn't interfere with my day to day life.  That only happened once.

A woman asked me for my phone number.  Nothing quite so enticing as a promise of a rendezvous to come so much as an order for take out.  I know my phone number like a rhythm; I start it and it flows out of me.  She tried to start it for me, but got it wrong.  That wasn't my area code, and once she got that wrong, once she shook my rhythm, I drew a total blank.  I had no idea what the number could possibly be.  I knew there was a seven in there somewhere, but how did the rest go?  For several moments I stammered and made embarrassed excuses, and tried to think of what to do.  I have an account program on my phone that has the number listed, but I couldn't access that while I was having a conversation.  Eventually I apologized, hung up, and looked up the number.  It clicked back into place immediately.  Of course that's my phone number.  Of course.

I never want to feel that sense of helplessness and confusion again.  I know my phone number as instinctively as my birthday.  I've had it for years and it's the only one I ever use.  If I could forget something so basic, what else could I forget?  That incident is now months in my past, and nothing like it has happened since.  Were that not the case I certainly would've gotten Dr. C.'s take on it.  Maybe I should have anyway.  Maybe next time. 

The Two-Year Adrenaline Rush

June 17th, again.  The anniversary of my diagnosis.  I felt little sentiment today, though that may be in part because I felt like hell all day due to a cold.  I went in to work and left a little over an hour later, after discovering that getting out of bed was probably the wrong choice.  As I type this my cold still lingers.  With a little luck I'll be able to sleep it off tonight.  If not, I can afford to sleep in tomorrow.

So I had my routine four-month MRI, and again it came back clean, or as clean as it's going to get.  It's almost certain those two little dots are scar tissue now.  Or possibly very, very lazy.

Both of my parents accompanied me on my appointment, an unnecessary gesture.  They always ask if I want them to come and I always express my honest indifference, but I think they interpret that as stoicism or bravery.  Of course my mother also gets irritated with me when I schedule appointments to fit my schedule rather than hers.  I suppose if I felt strongly enough about it I could just ask her - usually it's just her - not to come, but I worry that the ill will it may create would outweigh any minor benefit. 

They also wanted to come into the exam room with me, to talk to Dr. C.  We went over the usual, about how I'm recovering, and what I have done and can do in the future to help my body continue to heal and adapt.  I read a news article about a study examining the body mass of marijuana users to the general population and found that they generally tend to be thinner, so I asked Dr. C. about any potential weight control benefits to the drug.  He laughed for a good minute.  He's heard of no such thing and said he wouldn't recommend I start taking marijuana or THC, not because he's against it but because he feels I have no need for it.  Instead, he recommended more coffee, a prescription I am more than happy to fill.

I'd made a decision not to bring up my depression in front of my parents.  It had subsided slightly since my last post but was still a concern, and Mom had started to have her suspicions.  Perhaps that "light" in my eyes that so many people noticed has started to dim.  But when Dr. C. asked if I'd like my parents to leave the room so that we might speak privately, I declined.  In retrospect, I'm not certain why.  Maybe some of that suspected bravery.

Now, Dr. C. has been treating cancer patients for longer than I've been alive.  I don't know if I'm easy to read, or if he just has so much experience that he knows better, but he insisted they give us a few minutes.  Once they were gone, I spoke with him openly and without hesitation.  He did not seem surprised. 

Several times during our conversation he reminded me that he is not a therapist, psychologist or psychiatrist, but what he said to me made a great deal of sense. 

We've all heard the story.  Car accident, child pinned in wreck, mother gets burst of strength to lift car off child, etc.  Well, Dr. C. said that effect isn't limited to things so dramatic as a car accident, nor do the effects always wear off immediately.  What I've been through has been, well, traumatic, physically and mentally.  His theory is that I've been cruising on an adrenaline rush for the better part of two years.  It makes a lot of sense.  That would explain my focus and determination in fighting my disease, my quick and thorough recovery.  Counter-intuitively, it might also help to explain why I've felt so calm these last two years: if I'm already running in "high gear" then wouldn't it take more of a shock to amp me any higher? 

Only problem is I'm not sure if I believe it.  There are reasons we aren't always high on adrenaline; reasons that mother can't flip cars whenever she feels like it.  Our bodies are not made to handle that kind of stress.  They'd break.  Still, it's some food for thought.

He gave me the number of a local therapist that's covered by my insurance, and said (again reminding me that he is not a therapist himself) that I will likely benefit from a combination of medication and "insights."  That's a nice word for it.  I like it. 

I'm not too crazy (poor word choice) about taking pills again.  I haven't called this therapist yet, and I'm not certain when I will.  I have been feeling better lately, if not as good as I'd like.  I'm still on schedule at work, though my spotty update schedule on this very blog shows me that I'm still not as productive as I want to be.

So I guess that's about where I stand.  Keepin' on keepin' on. 

In other news, the U.S. Supreme Court ruled that companies cannot patent naturally occurring human DNA, so that's pretty neat.  Sounds to me like a pretty good compromise between research for the benefit of human kind and protection of property, since altered DNA can still be patented.  Also means no one can sue me for copyright infringement for replicating my own DNA without a license, and I'm all in favor of healing as a basic human right. 

On Trucks

I've made no secret of the fact that I've never taken comfort in the platitude so often given to cancer patients that anyone could die any day, that they could step off the curb and get run down by a truck without notice.

So the other day I was driving home from work.  What I noticed first was the truck's speed.  A bright red pickup truck, I noticed it because it was going so fast.  My first thought, "wow that guy's moving."  My second thought was, "he is entirely in my lane."

He swerved to avoid the car in front of me, and would have stuck it head on had it not done the same.  He was moving so fast that it wasn't until he was already gone that I realized what had happened, and that I could feel my heart pounding, my pulse racing.  He must have been going over 100mph.  Had he hit me dead on, there is no chance I would have survived.  The same could be said for the car in front of me.  I played through the possible scenarios the rest of the ride home.  What I would have done had he struck me but not killed me.  Whom I would have called first.  Or if he'd struck the car in front of me.

But he didn't.  He just kept on driving.  I'm not normally the sort to hold grudges but I admit to looking for red pickups on my way to and from work since then.  Once you start looking, they're everywhere.  One belongs to a co-worker but is the wrong shade, and much older.  Another looked about right and is an emergency vehicle - which would explain the speed - but they weren't going code the day of the "near-incident."  At least a dozen others, scattered about in random driveways and parking lots.  There's no sense to looking, yet still I look.

Anyway, none of that explains why I haven't posted in so long.  The reasons are two-fold, the first being that I've felt unusually withdrawn lately.  I haven't felt inclined to write, not here or elsewhere, or partake in most of my other usual hobbies and interests.  I've wanted the world to just leave me alone for a time, but as the days turned to weeks I came to recognize this as depression rearing its ugly head again.  I'm not sure what to do about it, but it was confirmed last week when I went to visit my parents and my mother asked me, seemingly out of the blue, if I was feeling depressed again.  She said I'd seemed sad, though I'd done my best to be pleasant for them.  I had a minor headache, I said, which was true.  She let it go but didn't buy it.

The truth is that I don't see the point in telling her.  If I do, she'll just tell me what she thinks I ought to do and then ask me every few days if I've done it yet.  Our relationship is much better since before my diagnosis but I really don't need that.  I don't need yet another task on my list, or another way in which I am not living up to her expectations.  I know there's no shame in seeking help, and if I don't find my way out of this funk on my own by June I'll do something about it.  That way I'll at least have a better idea if it's the cancer playing tricks on me again.

The second reason is that I caught word of a crackdown at work, where they're going to start monitoring internet usage quite closely, and restrict it to only things related directly to work.  While they've had plenty of sympathy for me, they don't pay me to write a cancer blog.  Not to mention I use an alias on this blog so that I don't have to censor myself, which I most certainly would were my boss reading it with full knowledge of who I am.  So whereas I used to do most of my writing at work, I now have to wait until I get home, at which point I've usually lost my muse or decided it's far too easy to just put it off until tomorrow (and tomorrow, and tomorrow).

My muse seems to have found me, which is why I'm now up passed my bedtime writing a long overdue post.  One that's costing me sleep I will doubtlessly miss come tomorrow morning.  I don't think I've made any breakthroughs tonight but just the same, I'm glad I wrote it.  I felt, finally, that it was something I could no longer defer.  For this exercise, my sleep will be shorter, but maybe it will also be more sound.

Coping with Survival

I have become comfortable with the idea of a truncated life.

That I will likely live to 35 but not 40 no longer frightens me as much as it once did.  It's something I've come to terms with.  Call it acceptance, denial or fatigue, as I'm not sure if it's one or the other or maybe all three.  But now I have a new challenge, and part of that challenge is that I feel like an arrogant asshole for calling it a challenge instead of simply reveling in it.  Some of this post is going to sound like fishing so please don't think I'm looking for comfort or reassurances.  I'm just sorting through some strange thoughts (as usual).

So I had that appointment with my doctor a while back, and I apologize to those of you who have been waiting to hear how it went.  Work's been a bit busy as of late, and that must come first. 

It started with Dr. C. entering the office with a man I'd never seen before, also in a white coat.  My mother was sitting beside me and I could feel her tense with confusion, wondering - as was I - if this new man was a specialist come to deliver some bad news.  Maybe to introduce himself, as things had gone so wildly out of control that Dr. C. could no longer handle them.  Dr. C. seemed to pick up on that quickly and interrupted himself to introduce the man as a student come to observe, and then assured me that my MRIs were "perfect."  He then ran me through the usual neurological tests, and again expressed true confusion as to how I could be doing so well.  My balance and coordination are flawless.

And then he said something that I kind of wish I didn't hear.  He said that I might be done with cancer.  Forever.

You see, contrary to popular belief, when a cancer survivor is in remission, it does not become more likely that the cancer will start growing again over time.  It becomes less likely.  I've gone a year and a half without any signs of growth or recurrence of symptoms, and he sees no reason to believe that is going to change.

I don't know how to feel about that.  My mother was overjoyed, of course, and over the next few days I received congratulations from various relatives, but I didn't feel any of that elation myself.  I'm not ready to believe it, even as a possibility.  I've spent so much time coming to terms with my mortality, I'm afraid to believe that I'm actually out of the woods.  I'm afraid that Dr. C. might be wrong, and I don't want to have to fight that battle against despair again.  This productive nihilism of mine works pretty well for me.

I'm quick to say that I am not my disease, but it's still part of me.  Even on the outside chance that I really am cancer free, I'm going to have to get MRIs every four months, either for the rest of my life or until they come up with a way to be absolutely sure.  It sounds sick, but I wonder if part of me even likes that I have cancer.  It gives me a sort of authority, or even immunity.  I've fought it, and people recognize that and tell me how much they admire my strength.  I get plenty of e-mails from people seeking guidance or a sympathetic ear.

And let's get one thing straight, I've spoken to people who started out in a better place than I, but have ended up in a worse place.   We didn't catch my cancer early.  It wasn't in a "good" place.  It wasn't small or well-defined.  It even looked like it was becoming more aggressive.  So here comes that question of "why me," once again.  Not, "why did I get this," but, "why might I have beaten it when others didn't?"  I guess it all comes back to the wise words of Woody Roseland.  There is no why, when it comes to cancer.  I'm not doing well because I fought harder, or because of some strength of character that I have and others lack.  I'm doing well because cancer is random.  It's like a tornado.  A tornado spares some people.  Others, it kills.  There are things you can do to improve your odds but it's ultimately up to chance.  For the time being, I've been very lucky and I kind of feel like an ass by offering advice to those who haven't. 

But people keep contacting me, including a friend I've known for years who was recently diagnosed.  If they find my counsel valuable, I certainly won't turn them away. 

On that note, I want to remind you, dear reader, that I keep my e-mail on this page for a reason.  Please don't hesitate to contact me if you'd like, even if you just want to vent or chat.  I do get caught up in work from time to time but I'll always write back eventually and I make it a point to respond to introductory e-mails ASAP. 

Speaking of which, I have two links for you all today.  The first comes from Cameron Von St. James, the husband of mesothelioma survivor Heather Von St. James.  I've linked to his post on anger, which I found particularly insightful.  Cameron provides a perspective that I cannot – that of a husband, father and caregiver – and so when he approached me about linking to his blog, I had no reservations about helping to spread the word. I found it interesting and hope that you'll all take a look.

The second comes from a fellow brain cancer patient, Ozman, who was recently diagnosed.  I suggested he start a blog and he took that recommendation to heart.  I suppose I should let him take it from there.

As for me, I guess I'll just keep doing what I've been doing.  It's worked out pretty OK so far, and as far as predicaments go, this one's way better than the previous one.  Fellow fighters, if presented with the opportunity to (possibly) not have cancer, I strenuously encourage you to take it.

Two months out

It's now been three months without chemo, or two months out from the end of my last cycle.  I continue to improve, though I'm starting to get a feel for my new normal; not as productive or sharp as I once was, but more productive, sharper, and more creative on average than I've felt for over a year.  Last night I awoke with a fascinating idea for a story kicking around in my head.  Maybe it's time for a new project.

Yesterday I had an MRI, and this Thursday I have a follow-up appointment with Dr. C.  I presume that is when I shall discover if going off the chemo has had any negative consequences, though I don't imagine it will.  I don't feel anything that leads me to suspect any regrowth or complications.  I haven't heard from Dr. C. yet as I might had the MRI shown anything particularly bad, but he doesn't work on Mondays or Tuesdays so maybe he hasn't had a chance to take a look just yet.  Either way, not something I intend to lose any sleep over.  One of these days, after an MRI much like yesterday's, I will hear some bad news.  Maybe that day will be Thursday and maybe not.  When it happens, I'll review the situation and we'll all figure out where to go from there.  Until then, no sense obsessing over it.

I know that I got lucky with my first operation.  It had an impact, sure, but I can still write.  I can still live my life.  But what about the next time?  What if they have to go back into my head and remove more of my brain?  Can I roll the dice twice?  Is there any chance I could get through a second operation as cleanly as the first? 

I have so many stories I'd like to tell.  I do not feel my death hanging over me, but it seems closer on the horizon.  I will not die today, but I know I will not live long enough to tell all of my stories to my satisfaction.  Yet even with that thought, one that might drive me to hours, even days of steady writing in the past, I find so little time to do more than what is required of me.  I tell boring stories all day at work, for people who don't much care about the ending.  They contain no twists nor turns.  Interesting characters are few and far between, anomalies often swallowed by predictability.  Rivalries are dulled by bureaucracy and legalese, and the outcome is always the same, time and time again.

I don't think a vacation would quite do the trick.  Were I wealthy enough to retire, then maybe I could focus more on telling the stories I'd like to tell.  But who couldn't use a little more money, especially in this economy? 

Maybe I'll continue to improve, and be able to spend more time writing for myself.  Even if I can't tell all of my stories, maybe with a little time and a little luck, I'll at least be able to tell the best ones.

In the meantime, at least I have this blog.  This is one story I can tell, and one in which I am quite personally invested.  One that, if I may be so bold, a few people seem to read, and one that, in the endless reaches of the vast internet, will outlive me, or you, or anyone else alive today.  Evidence that once upon a time, there was a man who called himself Knightly.

And Here's to Life

So not bad, as far as parties go.  Not bad at all. 

I spent the night with a few friends from high school, and a few of their friends, and a few of their friends' friends.  About a dozen of us, none over the age of 35, yet three of us were cancer survivors: one had testicular cancer, one had lymphoma, and lastly little old me.  It seems like that shouldn't be the case.  Too many of us are getting sick far too young these days.  Or maybe we were always sick, and only now, with this generation, do we have the capacity to notice.  Anyway, onward to happier things.

I have some great stories from that night but sadly they are not mine to tell.  At least, not just yet.  One was equal parts embarrassing and romantic, and ended with a woman from my past quite eager to see me again soon.  She was actually my first kiss - if you'd like to call it that - just a peck on my cheek on a dare from her friends, back in the first grade.  Thankfully little more than that at the time, as "elementary school sweetheart" sounds profoundly creepy.  Maybe we can build something a little more significant this time around.

The party did me a world of good.  I felt like my old self; sharp and quick, able to elicit laughter in one moment and contemplation in the next.  Yet I'd set aside that cautious, neurotic part of me that had always held me back. 

Not a bad way to start a new year.

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.

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.

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.

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.

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.

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.

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. 

Motivation (or something like it)

Yesterday was an unusually productive day for me. 

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

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

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

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

On that note, I need another cup of coffee.

Well, that's a little better

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

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

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

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

Staring down tigers

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

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

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

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

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

Asymptomatic

I am a hypochondriac's worst nightmare.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Waking

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thus began one of the worst nights of my life.