Thursday, June 25, 2015

Well shit.

I've taken a break from this blog for, oh, about a year now, as I'm sure some of you have noticed.  I think the political nature of my previous post gave a fair indicator that I was no longer using it as it was intended, as a sort of release valve for the pressures of cancer patienthood, then cancer survivorship.  There have been a few other topics I've considered broaching from time to time, particularly transhumanism (cybernetics), but have never felt fully inspired to attack head on.

Seems I'm no longer a straight-up cancer survivor, as I've slipped back into patienthood.  In fact, I've slipped pretty heavily.  They know I have grade 3 cancer and suspect GBM4, so they're treating me as such.  Which is... fine, I guess.  It's fine.  I've been recovering with my parents since early May, when I apparently lost some time.  About a week, I've been told.  My mom says I was pleasant if not very passive during that week but I don't remember a moment of it.  At least I don't think I do.  They took away my driver's license so I'm kind of stuck here now, and they aren't letting me work, which in a bigger view makes a lot of sense.  Don't want to give too much independence to someone who doesn't remember what he's been up to. 

Loyal readers, this might be it for me.

So, details.  Seems a tumor can grow again without enhancing on the MRI, then suddenly, like flipping a switch, the whole thing lights up like a Christmas tree.  That's what happened to me.  I have several tumors now, all in the brain, which is also not unexpected.  They don't know how long it's been growing but we all saw this coming.  We threw everything we had at it the first time around, knowing we weren't saving anything for the second time.  Well, this is the second time.  I tried a special clinical trial limited to fewer than 100 patients nationwide and that's what gave me that blackout, or so I'm told.  Now I'm on Avastin, which prevents blood supply growth.  My feet look like water balloons.  No one's telling me to get my affairs in order just yet but whenever I bring up the topic of the future, things get tense.  Mom is driving me absolutely nuts.  Whenever I say I'm going to go to bed, she bum-rushes me with a huge list of things she needs me to do, or pointless questions, or assumptions she's made about the doctor's point of view and now advocates as the given truth.  If I ever push back, she acts like I'm viciously attacking her.  I'm dying, mom.  I'm dying.  Let this be about me.  Just this once.

Friday, October 4, 2013

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. 

Monday, June 17, 2013

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. 

Sunday, April 14, 2013

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.

Wednesday, February 20, 2013

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.

Tuesday, January 29, 2013

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.

Thursday, January 3, 2013

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.