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.

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.