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.

No News is Good News

And good news is good news too.

I haven't had a whole lot to report lately.  Things have been pretty quiet and I rather hope they stay that way.  I guess that's just how this stage of treatment works; things are either boring or bad.  Given the choices, I'd prefer boring.  It'd be nice if I could try out one of those new treatments even if only for something to write about.

I did get a call from my neuro-oncologist in Manhattan with a bit of good news.  He and his fellow took it upon themselves to go over my MRIs since the end of my radiation treatment, pixel by pixel.  They're in agreement that my cancer has not merely been stable, but has not changed in the slightest.  They are increasingly of the opinion that the two dots of enhancement that show up on my MRI are actually just scar tissue, which I've got to say would be pretty awesome.  So far that doesn't equate to any sort of change in my ongoing treatment, but they say if there hasn't been any change by October we can discuss ending my chemotherapy early.  That wouldn't quite be a confirmation that I'm cured, but it's about as close as I can get.  I'll take it.

In other news, the good people over at Cancer Forums have offered me a position as a moderator in their Brain Cancer section, and I have accepted.  To anyone who hasn't taken a look yet, it's a great community that offers support, advice, networking, and even just a sounding board for all patients of all kinds of cancer, as well as their friends, families and caretakers.  The stories told on those boards are honest, sometimes sad, sometimes inspiring, and I am honored for the opportunity to help maintain the level of quality that brought me there in the first place.  I've made many friends through my participation in the forum, including regular posters, other moderators, and the occasional individual who has contacted me privately for advice.  I like to think that maybe I've helped a few people along the way.  It's a great resource and I would recommend it to anyone.

Happy Leap Day, everyone.

MRI Results and Other Stuff

Had another MRI last week and got the results back: no change.  Still stable.  I find myself thinking about how nice it would be to get a little improvement but I can't really complain about a lack of progression.  I've actually felt pretty good lately.  My mind's felt clear and sharp, and I wonder if my brain's started rebuilding some of those old connections that were so unceremoniously severed or cooked months ago.  If we have any linguistics experts in the audience it might be fun to chart my vocabulary over the course of my blog (linguistics experts tend to have an unusual definition of "fun"). 

I've been chatting with my friend Will again, the one in Canada, and he only has a few more rounds of Temodar left before his doctors cut him loose.  He'll still get regular MRIs and whatnot, but that will be the end of his treatment.  It's caused me to wonder what that's going to feel like.  My NO told me that I'm going to be on 5/28 cycles of Temodar for one year, by which he means two years.  Maybe it's the kid in me but "two years" still feels kind of like, "forever."  Like I will always take Temodar for five days out of every 28, for all perpetuity (having fun yet, linguists?).  There will come a day when I will probably stop taking Temodar.  I imagine that will be quite frightening.  The chemotherapy is the only thing I'm really doing to fight my cancer.  If I stop taking it, will that mean I'm no longer really fighting it?  What if it starts to grow again, once the chemo is completely out of my system? 

I know these thoughts aren't restricted to some point months and years in the future; it's entirely possible that my cancer could start growing again right now, regardless of my treatment.  It's also likely that after two years, the risks of continuing chemotherapy would outweigh the benefits.  The people who make it seem to think so, and that's a company that would absolutely love to keep selling me pills for as long as possible.  It gets back to bravery versus endurance.  Right now, I'm enduring my treatment.  What happens when there's no longer a treatment to endure?  I guess all I can really do is hope there's something new for me to try by then, perhaps that TTF thing I linked earlier in the month. 

I've been playing Kingdoms of Amalur: Reckoning lately.  It's a pretty neat game, but one of the core elements of the setting is that everyone has an established fate, and there's an order of individuals who can read that fate and tell people how they are going to die.  They develop the idea pretty well, to a point where there are a lot of familiar thoughts and words.  Like a father, debating with himself over whether or not to tell his family that he will soon die, and whether it is selfish of him to not want to see them suffer with that knowledge.  The story of the game revolves around the fateless protagonist, who, by virtue of their blank destiny, can alter the fates of others and save lives that were not meant to be saved.  Maybe once I'm done with chemo I'll keep an eye out for people with pointy ears and giant swords. 

Then there's God Bless America, another movie about cancer, specifically brain cancer, specifically how it's completely, totally 100% lethal.  It's used as a typical, "nothing to lose" character trait that drives the plot, wherein a brain cancer patient goes on a rampage against vapid American pop culture and also he picks up a teenaged girl somewhere along the line for some platonic and non-creepy reason.  A plot like that doesn't really hold up to close examination (why kill someone when you can just, you know, move away from them?) so I imagine it's more about catharsis than anything.

I still haven't seen 50/50, but have been assured that it makes having cancer seem like a totally awesome life filled with casual sex and frequent naps.  Guess I'm half way there. 

Smooth Sailing

I had a visit with Dr. C. yesterday and got the all-clear to start my chemo.  Not a whole lot has changed since last time.  My blood counts are still great, I'm still tolerating the chemo well, no particularly alarming changes.  All the same, I'm scheduled for my bi-monthly MRI next week just to make absolutely sure everything's behaving as it should.  Except, of course, for that pain in my side.

Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was.  He concluded, with a reassuring confidence, that nothing's wrong.  He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain.  He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about.  The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise.  It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area.  Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease.  I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal). 

I feel confident in his skill as a physician, and in his diagnosis.  I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan.  I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations.  Even if the intermittent pain never goes away, I can live with that.  Just so long as it's not something we need to address RTFN.

Hope, Fear, Integrity and PR

Lately I've had cause to spend a little time thinking about alternative treatments.  Not for myself, but because I've been asked for my opinion about one in particular.  I'm not going to rail against them again as I've made my stance abundantly clear: they're harmless at best and criminal at worst.

Rather than sit here and fume about the cruelty of these self-proclaimed "renegades," fighting the "corrupt mainstream medical conspiracy," I've wondered why they seem to get so much traction.  I think it's more than simply offering a cure to the desperate, in part because the individual asking me my opinion seemed to already have a quite skilled doctor.  From what I understand of this patient's diagnosis, their prognosis is about as good as it gets when it comes to brain cancer.  Low-grade, very little enhancement, no progression...  Controlled.  Even so, they came away with the impression that their doctor told them to go home and quietly die if they so please.  Their doctor may be skilled, but not terribly personable.  They were so frightened they didn't want to get a second opinion out of an unwarranted certainty that the next doctor would give them even worse news, or insist they go through radiation or chemotherapy.  So they asked me what I thought about Burzynski.  And I told them.  At length.  I was less than complimentary and at one point I think I may have wished cancer upon Burzynski himself. 

That kind of heat is pretty rare from me, but I'd like to think it came from a good place.  I was not angry at Burzynski for lying (I mean, I am, but that's not where I was coming from at the time).  I was worried about the other patient, and that they might put their health at risk chasing a false hope even though - as shown by yesterday's post - there are plenty of real reasons to have hope.  I was worried that Burzynski's unsupported optimism would overcome their doctor's unwarranted pessimism. 

So what is it that makes a false cure more appealing than a real one?

For one, lies are a lot more flexible than truths.  Everyone peddling an alternative medicine can twist (or outright forge) figures to make their product look like a miracle cure.  It's easy to say that their treatment works so well that it constitutes an existential threat to modern medicine itself.  Crying conspiracy is a very useful tact: any lack of evidence or any evidence to the contrary can be dismissed as part of the conspiracy.  We see it in politics all the time.  Meanwhile, legitimate doctors with legitimate treatments are constrained by these little annoying things we call "facts," and when it comes to brain cancer, the facts aren't too pretty.  They used to offer no real hope at all.  Even today, that hope is slim and preliminary.  Except it's real, and that's the important part.  

There's also the matter of what drives people to become con artists, what drives people to become doctors, and what makes someone a leading con artist or a leading doctor.  The most famous con artists are the best liars.  The ones who make the biggest promises, who assemble the best false evidence, and the biggest followings of supporters who are so desperate to believe, they will fight that con artist's battles for them.  I'm sure if Burzynski's followers find this post we'll see an excellent example of that.  I sometimes wonder if the cons believe their own con; if they are not liars but are simply deluded.  I'd really like to think that.  But whether they are lying to themselves or to others, the hallmark of a great con artist is appealing to their target.  They are salesmen.  Selling is what they do best.

A medical researcher has no such aspirations.  They deal in facts and speak factually, even when the facts seem grim.  They build a career by doing good science, not by sales figures.  They build a reputation among other scientists, who know that reality is not determined by popular opinion.  People who know that, if every man, woman and child on the planet holds a false belief, that belief remains false.  That 7,000,000,000 people can be wrong.  Sure, bedside manner is important and I've found that the best doctors not only know their facts but can also relate them to their patients, but a doctor who gives you the wrong information in a gentle way is not a good doctor.  First and foremost, we want our doctors to be right. 

Even when the truth is terrible.

Bill Doyle - NovoCure's Tumor Treating Fields

Here's an interesting clip from TEDTalks describing a new treatment for brain and trunk cancers that has just completed clinical trials.  In trials, GBM4 patients whose cancer had recurred after they'd received surgery, radiation and chemo wore this device instead of taking another round of traditional treatment.  While it did not extend their life expectancy beyond that of the control group, it kept them alive just as well but without any side effects.  No nausea, no fatigue, no chemo fog... just a silly robot hat.  A small price to pay. 

Bill Doyle cites one patient (whose results appear to be atypical), who was given three months to live.  Within one year of using TTF treatment, he no longer showed any enhancement on his MRI.  Five years after starting his treatment, he's still alive, without side-effects and well enough to go to work. 

From what I understand, the treatment involves wearing a device over the afflicted region.  It is totally non-invasive, and uses an electrical field to suppress cell reproduction.  Even though it's been proven to work on its own, Doyle says studies are ongoing on how to best use it in conjunction with other treatments.  Rather than replace chemotherapy and radiation, it could dramatically improve their effectiveness. 

These are some exciting times, my friends. 

The Slippery Slope

Well, not exactly a slope, really.

This morning as I walked to my car I stepped on some black ice and slipped.  There was nothing around on which I could steady myself.  Nothing firm of which I could take hold.  Just me, and the blacktop, and my fleeting equilibrium.

I didn't fall.  I caught my balance the old fashioned way, that intricate and instinctive feat of coordination that allows us to thrust our center of gravity back in line with our bodies and remain upright.  This isn't the first time I'd slipped and managed not to fall, nor would it have been the first time I'd slipped and ended up on the ground.  It was the first time I'd done either since my operation, and so I immediately recalled my first meeting with Dr. C.  That was the one where he was genuinely surprised that I was so stable on my feet after all I'd been through.

I started to wonder how things could have played out.  What if I'd fallen?  I'd probably have fallen backward.  Would the jarring motion of the impact have done anything?  What if I'd hit my head?  I would have hit the back, rather than the weakened front where I had my resection.  What would I do if I felt fine?  Would I pick myself up and go to work?  What would I do if I didn't feel fine?  Should I have gone to the hospital either way?  Is that who I am now?  The sort of person who can't even deal with a fall on his own?  All of my various neurologists asked me if I'd ever fallen and it seemed like such a ridiculous question, akin to asking if I'd ever sneezed.  Of course I had.  What of it?

But I kept coming back to Dr. C.'s reaction, and the implication that I was unusually stable.  Were I more typical, would I have been able to catch myself like that?  Or if I want to get philosophical (possibly spiritual?) about it, was I supposed to fall?  Was I supposed to spend today in the hospital?  Was I supposed to be forever changed and further disabled?  Was I supposed to die today?

Hell of a thought for a Monday.

My past self would have taken the fall, picked himself up and gone about his life.  I admit that had I fallen, I likely would have done the same even if I didn't feel quite right, in the hopes that the feeling would go away on its own over time.  I know the real warning signs to watch for, don't I?

None of that mattered because I didn't fall.  I got into my car and I drove to work, albeit with a little extra care having confirmed that the roads were icy.  I felt good having reaffirmed that I was still capable of such a complex automatic response, but unsettled about what may have happened were I not.  Chances are, there will come a day when I slip and fall.  I wonder, what choices shall I make on that day, and how shall they serve me?


Laura, if you're reading this and didn't see my response to your comment, I'd be happy to answer any questions you might have.  You can reach me at knightlyqblowguns(at)hotmail(dot)com.

Maintenance

There are two things that particularly suck about this stage of cancer treatment.  Aside from the whole "having cancer" thing, that is.

First, very little is actually happening.  I see Dr. C. once a month.  Ever other month it's MRI time.  Generally speaking, there's nothing to report.  It's like watering a plant.  Plant still alive?  OK, great, don't forget to water it again later.

Second, I have to wonder if every slight ailment or discomfort is some horrible disease or metastasis, and it's not hypochondria because I do have brain cancer, which is a horrible, potentially metastatic disease.  It usually doesn't spread to other parts of the body but "usually" is not "never," and 29-year-olds "usually" don't have brain cancer in the first place.

Case in point, that little pain I mentioned a while back, the one I feel under ribs.  It hasn't gone away.  At first I thought it might be due to the chemotherapy, as unexplained pains are a common side effect and I've had two sets of X-rays taken of my torso, one by an oncologist and one by a pulmonologist.  Neither saw anything of concern.  ...except I feel something that concerns me.  There's something causing this.  Lately I can feel something pressing on my ribs when I stretch, and I wonder if the right side of my abdomen isn't just a little bit distended along my flank.  It could be my mind playing tricks on me.  Or it could be another tumor.  Or maybe a blood clot.  Or an organ swollen for a more benign reason.

That side has always been a little odd.  I lost some weight in college and when I took a deep breath I could feel something rubbing against the bottom of my ribcage, like it would naturally fall on one side but my inflated lungs would push it to the other.  I still get that sensation sometimes.  Sometimes it would "catch," and I'd get a stabbing pain if I tried to inhale too deeply.  I always thought that was normal, like a "stitch" that some people get.  It would always go away on its own pretty quickly, as if it were a muscle cramp.  Who knows, maybe that's what it was.  Maybe it was unrelated.

But I take solace in one simple fact: my bloodwork is rock solid.  Nearly perfect.  Not just in terms of platelet count and the like, but on my CBC I fall directly in the center of normal on all readings save one, which is still within normal bounds.  Were something impeding the function of any of my gastrointestinal organs, that would show up in my blood.  The question is, would all of it show up in a standard CBC?  After all, they can't tell everything from that little test strip.

Maybe I'll ask for a full course next time I see Dr. C., just to be sure.  Either way, I'm going to get to the bottom of this.  I can feel something there, regardless of what the X-rays show.  I don't know if it's swelling, or a cyst, or a tumor or what, but I need to figure out what it is, and take care of it if it's going to be a problem.

I got lucky when the neck thing turned out to be nothing but a cheap mattress.  I hope my luck holds out.

ICT-107 GBM4 "Vaccine"

Speaking of new tools...

The approach with this particular vaccine is unique, Lesser added, because it is targeting the antigens or proteins that are present on glioma stem cells, whereas other treatment approaches mostly target differentiated tumor cells.

"The antigens used in this vaccine target the tumor stem cells -- the handful of cells that keep the tumor alive and dividing. Most of the cells we kill with standard treatment are likely not the ones driving the tumor growth. If the stem cells aren't targeted, they keep generating more tumors."

According to the biotechnology company that is conducting the trial, the Phase I clinical study of ICT-107 in GBM involved 16 newly-diagnosed patients who received the vaccine in addition to standard therapy -- surgery, radiation and chemotherapy. Those patients demonstrated a one-year overall survival of 100 percent and a two-year survival of 80 percent. Although only a small number of patients were treated, these results compare favorably with historical 61percent one-year and 26 percent two-year survival with standard care alone.

They're also working on a version for lower-grade gliomas.   Sounds like it's not perfect and 16 patients is pretty close to the line between "data" and "anecdote," but this just might be the answer I've been waiting for.  I guess with this - as with so much else - we will have to wait and see.

Eric Kostelich on Chaos Theory and Brain Tumors

Interesting interview over at Boing Boing, about chaos theory, forecasting seemingly chaotic systems, and how that applies to brain cancer.  Not the most pleasant read for someone with brain cancer as they take special care to emphasize how deadly and untreatable it is, but fascinating as long as you don't expect them to pull any punches.

It seems that Kostelich thinks with enough research we could forecast what a cancer will do in the same way we forecast the weather.  That could have a profound impact on "accuracy-by-volume" treatments like radiation, as instead of treating everything within 2cm of identified cancer they could only treat the area where the cancer's expected to spread next.

My understanding, and from personal experience with a family member, is that you're right, this isn't going to cure cancer in general or glioblastoma specifically. But one of the real goals of treatment is to help patients live as well as possible for as long as possible. The age of highest incident for the type of brain cancer we studied is between 40 and 65. If this result allows you to live two months longer than you otherwise would maybe that makes the difference between seeing your daughter get married or not. We can't prevent the inevitable, but we might help them live better or longer. If we can develop good enough mathematical models and be able to tell patients that going through another round of chemo isn't likely to help, then they can decide to spend that time with family instead of in the hospital. That's beneficial in it's own way. - Eric Kostelich

Can't argue with that.

Still, if they get as good at forecasting cancer as they are at forecasting weather, I think the best they could do is tell me I probably don't have cancer and that my core temperature will be in the 90's all week.

Resolutions

Without fanfare or any particular note, 2012 arrived at the Blowguns household, and nothing - save the clocks - changed.

I've never been a big fan of New Years.  I like it better than the "holidays" as no one really argues about New Years.  We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content.  I was at my computer and noticed that it was 12:06AM.  That was my celebration.  No alcohol.  No company.  I didn't even watch the ball drop.

I did find myself thinking about resolutions.  They seem so trite, now.  Who cares if I lose 10 pounds?  I have brain cancer.  Who cares if I earn a raise at work?  Brain cancer.  All of the things I'd love to change are outside of my control.  I can't resolve to be cancer free.  I can't even resolve to have no progression over the next year.  I can't resolve for science to find a cure.  I can't resolve to be the object of divine intervention.  I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not. 

To be honest, I never really did the resolution thing.  I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve.  Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week?  That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer.  I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date.  That said, I rarely made changes in my life.

So I think I'm going to make a resolution this year.  I resolve to make it to 2013.  There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013.  In 2013, I can worry about making it to 2014.

I continue to have good days and bad days.  I've noticed more and more holes in my memory.  Little flashes of familiarity floating, unattached.  I struggle to place them in my life and find their origin but I often fail.  When I succeed it's a small victory but I can't help remember a time when this was effortless to me.  I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed.  These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.

That aside, my vocabulary seems to be recovering.  On my good days I'm quicker with my words and they flow more naturally.  It's less of a struggle to write, which is an indescribable relief.  I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.

I'm doing all right emotionally.  No major breakthroughs nor setbacks.  No waves.  I haven't worried about it much as I have other things to deal with.  Lately I've been hanging around the Cancer Forums (linked to the right).  The support is nice, but what helps me the most is when I can help someone else.  If I can ease their worries, I can ease my own.  Maybe it's a bit like comforting my mother.  Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.

Maybe I feel numb because I spend so much time alone.

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.)

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.

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.

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. 

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.

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.

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.

Motivation (or something like it)

Yesterday was an unusually productive day for me. 

I've always had a tendency to coast, tempered by a work ethic strong enough to make a good impression.  Not ideal for anyone but it works.  Over the years it's instilled in me a sense that more is less, or that my optimal state is to be at rest, with nothing in particular to do, nowhere to be, and eventually, no capacity to easily find something to do or place to be.  In other words, I spent most of my life meeting my obligations and otherwise doing as little as possible.  I'd go straight home most days after class/work and veg until some other obligation came up (usually class/work again).  I told my therapist that I never felt like I had the energy to stay out in the world and do other stuff, or even expose myself to other stuff.  She asked me - rightly - how much more energy that actually takes. 

After yesterday, I feel her point.  Sitting on my couch watching TV takes very little effort, but standing around some place that isn't my home takes very little effort too.  Sometimes the drive is shorter and the food is better, too.  I somehow doubt I'm going to turn into a bar fly - change takes time, after all - but it's given me something to think about.

In addition to the post I wrote yesterday I got quite a bit of work done, of reasonably high quality.  I paid some bills, canceled one appointment, made another, answered some e-mails, did some banking, walked around a store for a while, opened a new credit card account, picked up some meds, and went grocery shopping.  Normally I consider it a productive day if I get even one of those things done.  Yet despite my intense dislike for night driving and traffic (both ubiquitous by that time of night), my decision to go home wasn't a matter of desperation or fatigue, but simply because I couldn't think of anything else to do (and I had some food in the car that needed refrigeration). 

I know a day of chores is hardly interesting but it did give me something to think about.

On that note, I need another cup of coffee.

Happy Turkey Day

The long weekend did me some good even though (or maybe because) I slept through more than half of it.  I struggled not to go out on Black Friday but my hand was forced when I found that the only food I had on hand was a can of tuna that very likely would have killed me (it took half a can of Airwick to mask the smell).  Thankfully I had the energy to deal with the evening traffic, though it was a short drive and any problems I encountered were more the usual sort: elderly folks who really can't see well enough to drive anymore.  As someone who has had trouble with the blinding furnaces that pass for headlights these days, they have my sympathy.  They just have much more of it when they're not forcing me to do 20 in a 45. 

My parents and I celebrated the holiday on Saturday, though traffic was still heavy enough that I had to take the back roads.  They still can't cook.  I brought a jar of gravy in the hopes Mom would notice that it was not "her gravy" - which is to say not au jus with all the fat skimmed off - and she seemed afraid of it once it started bubbling in its saucepan.  It wasn't a bad evening.  We didn't fight, and they seemed very happy to see me.  Absence makes the heart grow fonder and all that. 

I've been having some minor headaches still, occasionally a little twinge behind one eye or the other, or a stiffness to the nape of my neck.  The pain is hard to describe, almost like a sinus pain.  Worrying, as they remind me of pains I had before my surgery, which were alleviated afterwards.  Pains due to pressure.  I'm about due for another round of chemo but I don't really know what sort of impact that will have.  It seems impossible that my cancer could have grown so much, so quickly that it'd be causing pressure headaches again.  Maybe it's a side-effect of the chemo?  But then why would it kick in so long after I took the stuff?  I don't even know if it matters.  There's not much they could give me to treat it, no matter what it is.  Just steroids, and I don't want to be on those for the next two years. 

Even so, it makes me nervous.  It's more than a pain in the neck (ha!).  It's a sign of things to come.  I can brush off my fears, the terrible awareness of my sickness, all that because most of the time I don't feel that bad.  A little tired?  That's not unusual for me.  No appetite?  I could stand to lose a few pounds.  Trouble focusing?  I just need a challenge.  But pains from within my head are harder to explain away.  I know they'll get more severe over time.  Even if they aren't serious now - even if they aren't even meaningful now - they will be someday.  Someday I won't be able to ignore my disease because it will refuse to be ignored.  It will be a constant presence, crushing itself into my consciousness, and it'll get worse and worse until there's nothing left but the pain and the confusion. 

And then I'll die.  I probably won't even be aware of it, which I'd say is a small mercy, except I don't know what I'll be "aware" of at that time.  Will I pass in a calm sleep?  Will my last thoughts be of battling hallucinations and delusions?  Will I be aware of those at my bedside, or will I die alone? 

I know these thoughts do me no good and I try not to obsess.  They're still just an intellectual exercise for me: imagining how it might be for someone else to die of brain cancer.  Except eventually, the disease will intrude so profoundly upon my life that I can no longer ignore it or bottle it down inside.  That bottle will shatter, and when it does, I fear what shall issue forth.

So, yeah, Happy Thanksgiving.