Tuesday, December 27, 2011

Little Kindnesses

You're always so polite!  You're one of my favorite customers!
 That's what the young woman at the register said to me today.  She worked at a sandwich shop, one that I frequented maybe once a month, if that.  It served hundreds of customers a day.  Yet merely because I'd always end my order with "please" and say "thank you" whenever handed something, even my own credit card, she remembered me and appreciated how I'd treated her in the past.  I was kind of stunned.  I didn't think I'd done all that much; just paid her the same courtesy I pay everyone.  I guess that was enough to make me stand out to her.  That's a little sad, that we've fallen so far that we can't even thank a stranger providing us with a service, but it still made my day, to know that her life was one iota better because of me.  And let's be clear, I'm not saying she'd be a depressed wreck were it not for my infrequent "thank yous," and when I say iota I mean the smallest degree possible.  But still, better.  Because she let me know about it, that made my day.  Another little thing, but a small reason to feel a little better.  To be honest I remembered her too, but she's usually working the register when I happen by and I haven't seen thousands of cashiers the exact same context since I last saw her.  I'd noticed that she was always smiling, always cheerful, and always told me to have a great day as I left.  I'd always respond with a "you too!"  I thought she treated all customers like that.  Maybe she does.

I put a lot of stake in these little things.  I try to smile at people and as I said, I'm courteous to everyone I meet.  Maybe it's a habit formed by my low self-esteem, a hope that I could seek approval from an unbiased party that knows nothing about me, or maybe it's just who I am.  I prefer to think the latter.

Once in a theology class - stop me if you've heard this one before - a classmate asked me, "if you don't believe in God, what stops you from murdering everyone?"  I resisted the overwhelming urge to cackle, "nothing," seeing as it was a class about understanding other beliefs and she had asked the question sincerely, but this is one of the most common questions the religious ask me.  I explained to her the value of camaraderie, the penalties of law, and most importantly how I still have ethics and morals even if I do not take them from a particular book or fear of divine punishment.  And I explained to her how the absence of God places upon us a responsibility to one another.  Essentially, we need to help each other as much as we can, because no one else will.  That's why I'm not holding out for a miracle - something inexplicable that would benefit only me - but for science - something understood that would benefit all.  And if you're wondering why an agnostic was taking a theology class in the first place, I was taking it for the same reason as everyone else: I was sociologically interested in the various religions of the world. 

That said, I really hope that girl never loses her faith, because if she does, yikes.

(It's my belief that the religious do have ethics and morals that are independent from their code of religious beliefs but that religion is the most obvious and immediately recognizable codification of those morals, and so few feel the need to examine it much further than that.)

Thursday, December 22, 2011

MRI Results (for reals)

After an extended and completely predictable series of screw-ups between the mail system and two separate hospitals, both of my oncologists have now seen the MRI report and the images, and have had enough time to make sense of both.  So the conclusive, official result is that I'm stable.  Nothing new, no signs of progression.  In other words, about as good a result I can expect outside of miraculous recovery.

I still have some things to get done before my next round, mostly getting my hands on the proper medications without having to drive half-way across the state, but otherwise it looks like I'll be starting my next cycle on schedule.

The side effects were pretty mild this time around.  Some fatigue and fog, but my appetite held stable and I still haven't had to take off any work (which is fortunate, as I must admit there are days when I simply fill a desk due to aforementioned fatigue and fog).  My hair seems to have stopped filling in, leaving me with a pretty significant bald patch above my left brow.  I still hold out hope it'll come back in at some point but for the time being it looks like I'm keeping the bandana.  There are a few products out there that can give me a closer shave than my current electric razor so maybe I'll pick up one of those and go bald.  I have quite an impressive dent in my head but it's easy to overlook due to its position and angle.  I must admit that I'm actually a little proud of it.  What'd you do this summer?  Oh, Cape Cod?  Fancy!  I had brain surgery.  No big deal.

A new question has started to pop up more and more, one I'm going to add to the list of, "things I wish people would stop asking."  This one is, "so you're done with your treatment, right?"  The question is difficult and depressing to answer.  I usually start out by explaining that yes, I'm done with radiation, but no, I won't be done with my treatment for about two years.  Then I see their smile vanish and the, "holy shit, you still have brain cancer" return to their expression.  Then I explain what 5/28 cycles are, usually without mentioning that my chemo dosage is much higher, or why they want to keep giving me chemo at all.  They usually come back with nothing, or, "well you look great!" or "your color's so good!"  Thanks.  I'm increasingly tempted to say, "you too."  People already know that I'm sarcastic but I'm increasingly aware of two things: first, that I'm a lot more familiar (and comfortable) with my cancer than most other people, and second, that never in my life have I given less of a fuck about empathy.  I'm sure between that and my new tendency to draw a blank mid-sentence sometimes, a few people have come to the conclusion that I am now a bit "off."  I've always been uncomfortable around people who are like that, so all I can do is hope I'm not making anyone else feel too weird.  Hey, look at that!  Empathy!  OK, I guess I still have a little.

Anyway, to all my loyal (and not-so-loyal) readers, followers, fans and stalkers, I hope you enjoy your holiday (or lack thereof) of choice to the best of your ability.

Monday, December 19, 2011

Snake Oil

Don't eat and don't breathe.  That seems to be what the quacks are telling me these days.

They point out that cancer needs nutrients to grow.  They point out that oxygen produces free radicals, which cause DNA damage.  Both are true, but what's to be done about either?  It's like saying I can prevent excessive bleeding by draining all my blood on a daily basis; it might work but it would kill me first.  I guess that's why they can claim it cures all forms of cancer; technically it does, along with every other physical, mental and social ill I may have for the rest of eternity.  Then they tout all sorts of all natural things I can put in my body to do... something.  Something magical.  They talk like cancer itself is a toxin and that carcinogens contain that toxin, so that if I have cancer I can somehow starve it by no longer ingesting these carcinogens.

I don't know if these people are naive or cruel.  I like to think they're naive but some have made a career of it.  Dr. Oz is a monster.  It's one thing to peddle sunflower seeds as a way to reduce wrinkles or whatever such nonsense but it is beyond irresponsible to offer a cancer patient an "alternative cure."  All it does is encourage them to forgo potentially life-saving treatment in favor of something that has never worked and will never work.

It's hard, when you have cancer and when someone who loves you believes the pseudoscience.  They send you these articles about these miracle cures.  They do it because they love you and want to help you.  They lie to themselves, and take false hope and false comfort in those lies.

And you, for that split second, before you realize what you're looking at... you share that hope.  That animal part of you, the one who just wants this all to go away, sees that someone is offering a cure.  Someone is offering a way to make it all go away, and no matter how well-educated you are, or how much you know, or even if you can immediately recognize a hoax, it still stings.  The lie speaks to a place more primal than logic or education.  The place that can make a grown man as helpless as a child, literally crying for his mommy, or alternatively, react entirely on adrenaline, faster and stronger than he ever could be were he thinking at all clearly.

So my soul is stirred in that fraction of a second.  It feels hopeful.

Then the hope is immediately crushed, because it is a false hope.  It is a cruel hope, peddled by the heartless who know that so many are so desperate to keep hoping, and keep watching, and keep drawing those precious advertiser dollars.  Even though I don't believe in the hope for even an instant, it still cuts me deep.  It is an offense.

For while my family may send me a message because they love me and want me to be well, the message reads, "I don't care if you die in agony as long as I'm financially successful."

And that, I cannot abide.

Monday, December 12, 2011

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. 

Wednesday, December 7, 2011

A few updates

I thought today might be a good day to look back on a few things I've mentioned in the past and left unresolved.

For starters, Sam's seen a few more doctors and it turns out he's fine.  His symptoms were caused by fatigue and eye-strain, and his opthamologist recommends glasses.  I'd prefer if he'd had a cranial MRI just to be sure, but I'd prefer everyone have one and it turns out the insurance companies don't really care that I think they should pay for more uncomfortable, expensive and likely unnecessary tests. 

That red blur to the far left of my peripheral has finally faded.  My vision problems are mostly resolved now, save some light sensitivity, the occasional flash of white or black, and that tiny little burn mark in the center of my left field of vision (still so small I only notice it when I'm reading and it plants itself firmly inside a letter).  My vision's still kind of blurry but, like Sam, I could probably use glasses.

My neck hasn't felt too bad over the last few days.  I'm still getting that MRI on Friday and am still concerned about it, but not as much as before.

Instead I have a new concern!  It seems there's a rare but severe side-effect to gadolinium-based MRI contrasts (including the one they use for profusion MRIs, which are what I've been getting).  It only happens in the case of severe kidney damage, but I went through most of my life with brain cancer so how the hell do I know what shape my kidneys are in?  Anyway, one of its symptoms is a skin rash with tiny mucin-filled nodules, and that's really the part that caught my attention.  Those patches of dry skin on my legs have a few nodules like that (turns out that stabbing pain I felt was caused by rubbing one of those nodules against my bedsheet).  That's just one of many symptoms, and even then it's not dead on (instead of dry skin I should have severely thickened and calloused skin, and the nodules are about half the size they "should" be), but it's enough that I'm going to have someone take a look before I let them inject me with contrast again.  Just to be sure.  After all, if that is what it is then I'm going to need to get myself to a nephrologist in short order.  If not, maybe I can get some moisturizer or something, or use some of the anti-bacterial/steroidal cream left over from my radiation treatment.

Other than that, hanging in there.  My appetite's been pretty stable and the fatigue's wearing on me but I'm still able to work.

Monday, December 5, 2011

Two cycles down, 22 to go

Last night I took the fifth and final dose of chemo for my second round.  I skipped the Xanax all five days, instead going with nothing but Zofran, and noticed some pretty clear differences.  Primarily, my stomach hurt more, and I got closer to nausea but didn't have any close calls (or not-so-close calls).  Hopefully the fact that I skipped the Xanax means I'll have an easier time bouncing back from this round, as I won't be battling withdrawal from that.

My sleep patterns have been all out of whack.  I can nap for three hours in the middle of the day, no problem, but I find myself tossing and turning at night, waking up frequently.  I'd say the two might be related but the same thing happened whether I took a nap or not.  Even so, I felt surprisingly awake this morning.  It is no longer morning, and I will be taking a nap when I get home.  I don't care if it takes three hours and if I don't sleep tonight; I'm really freaking tired. 

My neck continues to trouble me.  The pain isn't constant but it peaked over the weekend, edging a little higher than it was as of my last post.  The sides of my thighs are very dry, and while sleeping the other night I suddenly felt like I'd been stabbed, but there was no mark, not even any tenderness.  It's reminded me of an episode I had back in 2008.

I was in a car accident that totaled my vehicle, even though I walked away and didn't even want to go to the hospital (mistake number one).  I felt fine for a few months, and to be honest I'm only guessing these two events had any connection at all, like some sort of soft tissue damage, because otherwise there aren't many other explanations for it and none of them are good.  Anyway, I was sleeping when suddenly I threw out my back, and I don't mean the usual intense but bearable pain.  I mean the worst pain I've ever felt in my life.  If I so much as tried to roll over, the pain would be so intense my entire body would clench uncontrollably, and it'd take me a few moments to relax again.  From what I've read, it sounded similar to accounts of people trying to move with a broken back.  The pain did fade, but it moved as it did, until it settled not in the small of my back but at my right thigh, and that's why I suspect the car accident may have been involved, as I was bracing myself with my legs at the moment of impact.  Eventually the pain subsided entirely so that I no longer had any trouble getting around, but I think I suffered some nerve damage.  That thigh would ache mildly every morning, and if I were to sleep on it I'd feel pins and needles, and little twinges.  That remained with me for two years. 

I think about that every time I feel an ache in my neck, or my back, or anywhere else, really.  It makes me wonder, was it the car accident?  Did I simply throw the hell out of my back?  Or was that a spinal tumor making itself known?  It is one of the few places where my brain tumor could metastasize, after all, and it's had plenty of time. 

My hands were bothering me a bit today.  For a while I felt a tingling spot on my left ring finger that came and went (it seems to have gone home for the evening and now I feel close to normal).  My hands started to shake slightly and I still don't feel like I'm at my most stable, but I've rested my arms for a while and it's mostly subsided. 

It would have been really nice to have a couple of months (or years?) worry-free.  My MRI is on Friday at 2:45PM (Eastern).  I hope it turns up clean but if it does then why the hell am I feeling these symptoms?  If it doesn't, then what can be done anyway? 

What a mess.

Thursday, December 1, 2011

Round 2

I went to see Dr. C. yesterday.  Short version is that my CBC checked out fine so I'm now one day into my second round of chemo.

The office was much more crowded than it was the first time I visited, so much so they didn't even have a room for me.  I spoke to the nurse in a separate waiting room, beside a rather nice fountain, sitting at a card table.  This was the same nurse who saw to me previously, the attractive young lady who had commented on how close our ages were.  She wasn't sure if Dr. C. wanted blood drawn or a simple finger stick, but I figured she'd been so good with the butterfly last time that it was actually the more comfortable option.  She missed this time.  As she apologized profusely she dug the needle around, the tip scraping over things that did not like being scraped.  I sat there assuring her that it's all right, not a big deal, as I tried not to flinch or lose my usual smile, and I won't say that had nothing to do with the fact that she was, as noted, attractive and close to my age.  Eventually she gave up and withdrew the butterfly, apologizing once more before fetching another lab tech.  "I never stick someone twice," she told me.  A kind policy to be sure, but I still have faith she won't miss next time.  Or at least I'll let her give it a shot, so to speak.

I told Dr. C. about my stiff neck and the occasional pain behind my eyes, and while he wasn't concerned he thought it prudent to move my MRI up by a week or two.  It's only every other month when I don't have symptoms; when I do, no harm in checking.  Even if they find something, I'm not really sure what they'll do about it.  They can't give me radiation again.  They don't want to operate again.  It seems like it's chemo or nothing, and I'm already on chemo.  Maybe they'd want to up the dose?  No point worrying about it now, I guess. 

So I took my first dose of chemo last night.  I've lost over 10 pounds since my last round, largely due to my loss of appetite, and skipped the Xanax this time since I don't like how tired I get coming off it.  Either way, it hit me much harder than previously.  My stomach hurt most of the night, and I slept poorly.  There were a few times I thought I might be feeling some nausea coming on, but I managed to keep everything down.

I wonder what I'm supposed to do if I throw up before I've fully digested a dose of chemo.  Wouldn't that be an underdose?  Maybe I'll ask Dr. C.