Friday, June 29, 2012

One Year

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

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

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

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

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

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

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

There are worse bargains to be made, my friends.

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

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

Thursday, June 7, 2012

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

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

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

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

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

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

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

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

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

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