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.

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

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

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

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

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

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

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

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

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

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

Not quite there yet, but closer

So it seems this whole low platelet deal isn't a one-time thing.  I guess back when I started chemo I had a healthy reserve of platelets and I've been whittling away at them over the weeks and months and finally used up all my spares, leaving me with the bare minimum (or less).  Short version is that I've had to delay my chemo again.  This time I had about 83,000 platelets per microliter, better than last time but still only about half the lower normal limit and too low to start my chemo.  They're going to check my blood again next week before giving me the go-ahead.  At least they'd better, because all these office visit co-pays are starting to add up.  If I'd known it was going to be this expensive I never would have agreed to have cancer in the first place.  Anyway, we're likely going to change my treatment schedule to 5 days on, 4 weeks off, instead of just 3 weeks off.  The chemo has worn me down.  I need more time to recover.  It boggles my mind that just two months ago they were thinking of upping my dose by about 30%. 

Work's been hard.  Deadlines are deadlines and I hate making excuses for myself, even if they're really good ones, but I've had a lot of trouble focusing lately.  I know that I need to keep working, for the money, the insurance and for the sake of my own emotions.  I just never really expected it to be like this.  You ask someone, what would they do if they knew they didn't have long to live.  No one ever says, "well gee, I suppose I'd keep working a full-time office job."  I'm one seizure away from that no longer being an option.  Of course that seizure would end a lot of other things as well, including the sense of freedom and independence I get from being a mostly-functional adult with my own car, my own keys, and my own home.  I'm one seizure away from being a kid again, but I don't want to go back there.  I just wish I wasn't stuck in this limbo, this constant state of "quasi-dying," where sickness and despair makes it harder for me to work but work makes it possible for me to have anything other than sickness and despair.  If this had just hit me a few decades later, maybe I'd have enough in savings for an early retirement.  As if that's the only reason to wish cancer had waited a while longer.  The other day a co-worker of mine told me I was lucky to be fighting this while I'm still young and strong.  I couldn't help but sarcastically reply, "yeah, it would have sucked if I didn't get cancer until my fifties or sixties."  He admitted that yeah, that was a dumb thing for him to say, but I reassured him that I knew what he meant and appreciated the sentiment.

Over the weekend I visited my parents to celebrate my recent birthday (I should probably update those "29s," but for some reason they all look so much nicer than "30s").  It was stressful, to say the least.  They invited over a few other relatives, including some that are a bit too high-energy for me.  Strange, active people.  I put on a brave face and soldiered through it, for my mom's sake rather than my own.  I felt cornered, in part due to my position at their too-small table in their too-small kitchen, and also because I was the center of attention at a party better suited to someone a third my age.  By the end I'd had enough.  Over the last year I've developed a far greater capability to withstand discomfort, but I've also lost a lot of patience for utter nonsense.  I think there was supposed to be some sort of puppet show but I politely excused myself and slipped out to have a moment to rest.  I felt beyond exhausted and had trouble keeping my thoughts straight.  I had trouble forming opinions, and articulating them.  I didn't feel I was safe to drive, so I spent the night on an uncomfortable air mattress on the TV room floor.  My brother and his wife were using the bedroom I'd used during the month after my surgery, when I'd stayed with my parents.

I don't get to see either of them often enough.  My brother isn't an outwardly emotional person.  He doesn't like physical contact, or expressing things as scary and dangerous as feelings.  He shows his affection in other ways, and over this last year he's been there for me in every way he could, given that he lives half-way across the country.  We'd kept in touch through e-mail but this was the first time we'd met face-to-face since before my surgery.  I know that it must have been emotional for him.  I wonder what he thought I'd become, and how close I was to his expectations.  Did he feel relief that I am so close to what I used to be, or sorrow at the significance of my shaved scalp, and that scar over my brow?

He, his wife and I spent some time together.  That's all I'd really wanted.  Not some party with loud relatives, or "events," or "activities."  I just wanted to be with my brother and sister-in-law for a while. 

Maybe it's time for me to do something other than struggle for adequacy.  I can't retire, but I can take vacations.  That sounds like the sort of thing a 30-year-old does from time to time, right?

Chemo sucks (finally)

Sorry I've been a bit absent as of late.  It's been busy at work and to be honest, I just haven't wanted to think about having cancer for a while.

Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.

How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.

The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.

I've always hated math.

I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer.  It's about a group of NYC detectives.  It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients.  He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated.  Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings.  I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.

It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience.  Worth a watch if you have Netflix streaming and nothing better to do.

Testimony from a Brother in Arms

I saw this over on BoingBoing, a beautifully written account about the latest in a line of surgeries to cure a talented man of an abdominal cancer that threatened a "radical penectomy," one of the most horrifying procedures known to science.  He was treated at the same facility and I, by a man whose name I recognize, and spent some time in a hospital I remember on my darkest, coldest nights.  I'd recommend it to anyone who has found my own account at all interesting for whatever reason.

I've thought, from time to time, about how brain cancer stacks up to other cancers.  Mainly whether it would be better to have a more embarrassing, more survivable cancer.  Brain cancer is, relatively speaking, pretty dignified.  Despite its high fatality rate, it's more akin to growing old before one's time.  Rectal cancer or urethral cancer tend to be more survivable (though are still extremely serious, of course), but I shudder to picture the trials patients of those terrible diseases must endure.  A "radical penectomy" is a real thing, and a man can live without a penis much more easily than he can without a brain.  At least, physically. 

Anyway, it's good to hear that Mr. Dery appears to have dodged that bullet with his member intact. 

My World, My Mirror

I have always felt a sort of connection to the natural world.  Over the past year, our state has been lashed by storms of unprecedented strength, shattering our characteristic forests and coaxing our citizens to further trim back what growth survived the wind and rain.  Derelict buildings, once masked by foliage, have started to emerge from the thinning woodlands along our streets.  I cannot help but think of my hair when I see familiar patches of forest, cut back so drastically I no longer recognize them, save for the many stumps. 

But I also have always felt a strange attraction to derelict structures.  They resonate with such stark, unashamed truth: this is what we were, and what we shall be.  Decaying, skeletal, a monument to our accomplishments and comfort but victim to the natural forces that were here before us and will remain after us.  I have always wanted to go exploring in one but know that that's both illegal and dangerous.  The former doesn't bother me much any longer, boyscout though I've been.  The latter makes me want to bring someone, so as not to go alone.  I do not know if I know anyone I could recruit for such an undertaking, but that is the only way to really know a derelict.  I pass an old house every day, on my way to and from work.  Its windows are open, some broken, some missing entirely as if gutted from the structure.  Dead vines lace across its bone-white facade, like black arteries through adipocere.  I want to go in.  I want to see how it was left, and wonder to myself, what story played out here?  Who was the last person to touch this discarded object, or that?  Did they know they would never return?  Did they regret not bringing it with them?  What were the last words spoken here? 

Above all, I am most connected with water, and perhaps that is why I cannot tolerate the intersection of derelict and water.  When I was very young, I couldn't stand the sight of something artificial obscured by the murk of a lake.  I remember seeing the ladder to a dock within the pea green water, light streaming around it, shadows reaching down into the darkness below.  I always imagined there was something down there, something metal and jagged and wrong, waiting to reach up and grab me.  I had to steel my nerves to swim over that dark water.  Even after I dove off that dock, and swam all the way down to feel the slime and mud at the bottom, 20 feet below, I still avoided the chains that moored the dock in place.  Then one year, I was nearly a teenager at the time, I went to the lake for a swim.  The other swimmers looked like there was something wrong with their skin.  Tiny, thin black lines, like hairs, all over.  They were all lined up in front of a hose, which was used to cleanse their bodies of this strange phenomenon, of the sludge that clung to their body hair.

Toxic sludge.  The lake had been poisoned by runoff. 

Another place miles away, the only natural spring I've ever seen.  I remember the natural stone pool into which it flowed, crystal clear.  The water was so pure, and so delicious.  It isn't, any longer.  It, too, has been poisoned.  

Fitting, then, that I too have become poisoned.  I wonder if I will ever be pure again. 

I know what it's like to drown.  I don't mean that metaphorically.  I mean that I have struggled for breath with all my strength, and found my strength lacking.  I have felt my lungs fill with water, and my body go limp.  I remember the incredibly clarity of realizing that I am about to die, and the peace of acceptance.  Then the weight on me lifted, I pushed to the surface with my last ounce of strength, and I coughed up two lungs' worth of pool water. 

Can't say I'm disappointed with how that turned out, but that calmness still haunts me.  If there's a moral to this story, I need some more time before I can see it.  Unless it's just that "Let's Drown Knightly" isn't a great pool game.

MRI tomorrow.  Wish me luck, boys and girls.

Losing my Winter Coat

"Have you been shaving your hands?"

A question of profound dignity and gravitas, it was asked, as so many others, over chicken soup at my parents' house, and by my mother.  A little background: ever since I became a teenager I have been, technically speaking, a pretty hairy bastard (...ladies).  Not like wolf-man or Chewbacca hairy, but through a mix of genetics, heritage and skin care choices, hairy enough that had you seen me and someone were to ask you to make a statement on the hairiness of that fellow, you might use terms like, "fairly," or "relatively," or "that guy should probably shave his hands."

However, I had not, nor have I ever shaved my hands, nor are they baby-smooth at this very moment.  Still, my mom was correct in her assertion that I am not as hairy as I used to be.  What body hair I do have is thinner, shorter, lighter and more sparse, such that I am probably now in the, "eh, I guess" category of hairiness, rather than the "oh yes indeed" category I had long occupied.

I hadn't noticed the change before then, honestly, unless you count my concern over my eyebrow, which leads me to believe I'm losing hair all over.  It would probably be pretty distressing to me had I maintained any delusions of keeping my hair, but as I haven't and shave it with the same electric razor I use on my face, I hadn't noticed any change there.  My eyebrow seems to have stabilized now, so if I'm becoming slightly less of a hairy bastard due to my chemo then I'll just add that to the perks of having brain cancer (it's a short list).

Speaking of chemo, I just started round six last night.  I'm pretty ready to stop taking this stuff.  I'm tired of spending half of every month exhausted and foggy.  I'm tired of dealing with prescription delivery services that screw up, then screw up again when they call to inform me they screwed up the first time, so that I get my pills just hours before I need to take them no matter when I call in my order.  Sick and tired of being sick and tired, blah blah blah.

But hey, at least I'm not a yeti anymore.