Tuesday, April 30, 2013

Attitude: the Ultimate Form of Alchemy

Attitude and perspective, in my experience, account for my mode of living, more than anything else.  Maybe it's obvious -- but if you have a positive outlook, and feel confident and comfortable in your own skin, your decisions come easier, and the borders around your path through life are crisper and more defined.  Mmm, I love me some crispy borders.

There are things I have to do to keep up my attitude.  Some of these things I've neglected for a very long time.  Without them, I flounder like a wild, floundering thing.  Some of these things are very specific -- I have to be writing, I have to be exercising in various ways (resistance, aerobics, martial arts, meditation), and I have to be listening to and performing music.  If I'm ever feeling unhappy, eventually (you'd think it would happen automatically at this point) I go down the checklist.  Am I writing?  Exercising?  Jamming out?  No?  Well, that's an easy fix.

Some of my essential items are more intangible.  I have to feel active, and I have to feel useful, for example.  If I don't have a busy schedule, it's harder for me to be content.  But if I have a busy schedule, and my business is superficial and not allowing me to feel useful, I feel even more dissatisfied.  These are the things I've figured out and saved on my mental hard drive, to pull up now and again when I need to perform some serious self-analysis.  Finding your things is important, because it allows you to have more control over your behavior, and overall destiny.  I prefer to regulate my own subconscious, or at least do as best I can, and not have it regulate me.

Today, I feel fantastic.  I've accomplished a thousand things (in my head, because in reality, it's more like 3 major things), and I have a thousand more on the agenda.  In fact, I'm using this blog post to distract myself from one of them.  Shit, I just said that out loud.  Oh well, back to finding my things, and nurturing my attitude.

Monday, April 29, 2013

And Stone by Stone, We Craft the Temples of our Hearts

My first unadulterated thought when I was diagnosed with cancer -- "My God, I've wasted so much time."  There are many facets or interpretations of this thought, but it's no mystery to say that this is my greatest sin: Time management.  In fact, the Grand Architect has seen fit to bestow upon me many talents.  Some of them practical, some of them a burden.  By the time I was in High School, I was involved in dozens of things.  And I was naturally better than everyone else at all of them.  I had a disastrous case of big-fish-in-a-little-pond syndrome in those days.  All of it was easy for me back then.  All of it except for basketball, which I hopelessly sucked at.  I wanted to play basketball in the worst kind of way when I was younger.  And I was awful.  I did it because I couldn't do it, and I persisted in joining the team every year because I thought it's what my father wanted.  Of course, that turned out to be false.  It didn't matter anyway because I quit the team sometime in middle school.  I quit because I was written off, for the first time in my life.  And it hurt.  Pain like that was foreign to me until then.  I was so naturally talented at anything else I picked up, and I had received so much praise in my life, that I couldn't deal with the fact that I might actually have to try hard to succeed at something.

I made a habit of quitting when things became overwhelming, or when I finally had to try.  I could easily have gone to school on a scholarship for multiple things (in fact, I did get a full ride for theater that I turned down, and I would have for music if I'd decided to audition).  Maybe it was out of fear that I didn't pursue any of them.  I didn't want my activities to get to the point where they'd be work, because then I'd have to be tested, and I'd have to work hard.  So I scrapped them all, and I just winged it.  Maybe I'd find something else, I thought.  Something at which I'd be even more talented, and something I'd never have to work at as long as I lived.  I would get by on my talents, and the world would recognize me for my intrinsic value.

I won't take the blame for all of it, though.  I was conditioned to avoid working hard for various reasons.  And I wanted everything I did to be fun.  I was a kid.  And kids should always have fun.  Regardless, I had never set limits for myself.  I allowed my wants and desires free reign over my life.  And I deliberately shied away from anything that would cause me any grief.  The real world was different, however.  And even though I grumbled about it, I never missed a day of work or even called in sick.  Ever.  I spent my last day of one manually labor job with an upper respiratory infection.  Even though I didn't like it, I acted very responsibly whenever I was employed in a "grown up" money job.  And that made my revelation even harder to stomach.

What had I been doing?  Working a "real" job these days is little less than indentured servitude.  There was a point, after I'd entered the workforce, where I let my "responsibilities" define my actions.  I worked 24/7 on a certain job, before my diagnosis.  In the morning, I woke up to multiple voicemails, and at night I'd fall asleep after solving the last crisis of the day.  I missed out, ruined relationships, lost touch with family, and halted progress on finding my real place in the world, all out of a misplaced sense of duty.  When I was diagnosed with cancer, I realized that it was never my duty to put my life on hold for the sake of an intangible ideal that had never been mine.  What I believe my duties are now is debatable, but right then I knew my sole responsibility was to do what I wanted without excuse.  And that's exactly what I set out to do.

My advice is clear -- find your greatest flaws, and fix them.  Discover what it is that you would admit to yourself if you were going to die.  You know what it is.  I did.  It whispered to me in the dark recesses of my subconscious long before I gave it a name.  Even when you find it, there is no easy fix.  Self-analysis is not a spectator sport.  My flaws took me unto the verge of death, and it was only through a terminal crisis that I willfully decided to deal with myself.  Maybe it's impossible to deal with ourselves otherwise.  Maybe it isn't.  My advice is to live as best you can.  That involves all of the intricacies of your soul that you call your own.  Find them, fix them, craft the temple of your heart, and carve out a place for the ones you'd like to bring along for the ride.

Wednesday, April 24, 2013

And So We Fight On

I struggle every day with the same thoughts, and the same burning questions.  I'd like to tell you about one of them.  Every day, I have the very distinct and overwhelmingly powerful thought that I'm not a good enough person to have been given extra time on this earth.  I was supposed to die, and I didn't.  And every day, I get upset with myself and obsess over the idea that I haven't done enough to deserve the time I have.

When I was diagnosed, at 25, I had already lived an incredibly full life.  I had several adventures, and had many amazing people in my life, many of whom I couldn't imagine living without.  My life was already its own reward, and each day, a wonderland.  I had already run after my dreams, traveling down various highways and dirt roads on the journey through my own soul, and through the tangled, unpredictable wilderness of my ambitions.  I accomplished a great deal by that point, in spite of my own propensity to commit the cardinal sin of wasting time.  But there were several things I could have done better.  Including a few I could have done much, much better.  I haven't always done the right thing, though I tried very hard.  Sometimes I did the wrong thing, and I did it on purpose.  I did it because it benefit me, or out of a hedonistic sense of momentary pleasure.  For a long time I adhered to misguided philosophies of morality, and justified behavior that had no justification.  I admit it's possible that I'm being too hard on myself, in hindsight.  I think that when you have a reason to pause and evaluate your decisions, more often than not you'll find yourself guilty of several things, whether it's fair, or logical, or not.  But these motives, whether deserved or not, help me to become the man I want to be.  And there isn't anything contrived or misguided about that.

Very generally, I feel that I don't deserve the good things that come my way now.  And that makes me work harder for them.  But harder in a very genuine way, because I'm no longer moving toward goals for the sake of achieving them, I'm only moving on things I actually want.  When you know what you want, and you aren't sure you deserve it, you become a better person, by default.  There are several reasons why I might have cause to be happy about moving forward these days, and all of them are quickly diminishing the thought that I no longer deserve to be happy.  It's possible that I have a clean slate.  And I have clear priorities.  Those two things make me formidable, and stronger than I've felt in a very long time.  It remains to be seen what I do with that strength -- whether I find the courage to follow through, or lose my willpower altogether down the road.  It seems very likely to me that I will meet my goals, one way or the other.  The fear that I'll sabotage myself is very minimal for now.  Of course, that goes in phases, like everything else.

My point?  Hopeful optimism.  Start feeling excited about being happy.  I am.  I feel a lot of pressure building up, whispering in my ear that it's time to be content, after a long winter of discontent.  If you allow such urges to course through you, even in times when you know you don't deserve it, you may just allow yourself to act on those urges, and end up suddenly, surprisingly, happy.  

Sunday, April 14, 2013

Let's Commiserate

Some days I almost forget that I survived a terminal illness.  Almost.

Inevitably, at some point during the day, I'll remember what I went through.  It's often triggered by the scar on my upper thigh.  I have two scars, but the one on my lower leg doesn't bother me much.  I can't say why the other one does -- there are several reasons, I think, but none of them easy to explain.  Some days it feels sore and acts up while I'm walking around or sitting a certain way.  It's hard to forget about something that causes you physical discomfort.

Tell me your least favorite thing about what cancer or another condition has done to your body.  Also, tell me if the scars ever heal -- physical or mental.  I struggle with a few particular things related to survivorship, and I want to know what other people think about, and what sort of questions or doubts everyone else obsesses over.  It would be nice for me to have an honest conversation about the kinds of things I worry about.  At the very least, so that I can admit them to myself.  And at best, so that someone can assure me that these things are real, and that it's okay to think about them.  

Maybe we can help each other.  

Tuesday, April 9, 2013

Supreme Genetic Overlords to Hear Case About Genetic Slavery

I get the feeling not many people are aware of the case coming before the Supreme Court next week.  At least, I hope that's the reason there isn't more of an uproar about it.  Public outcry was loud and boisterous when the internet was at risk -- when SOPA was on the table.  But I haven't yet heard anyone outside of the breast cancer community talk about the Gene Patent case with any gusto.  If you are aware of this case and aren't upset about its implications but were upset about SOPA, it's time for a public shaming.  You are basically saying you care more about sifting through pictures of illiterate cats than you do about private industry owning 20% of your body.

It's difficult for me to collect my thoughts long enough to write about the idea of gene patenting, because it's so completely absurd.  But I'll do my best to sort through it.  We'll start with what actually qualifies as intellectual property and what doesn't.  Due to recent circumstances in my own life, I've become somewhat of an expert on the topic.  First off, only physical, man-made material is subject to intellectual property law.  Ideas, thoughts, topics of interest, archetypes, stereotypes, etc., are not.  Neither are naturally-occurring substances.  I couldn't go out and patent a type of tree, for instance.  Disclaimer: Please make sure if you are seeking legal advice for anything related to intellectual property law, that you don't listen to me.  I'm not a legal professional, I'm just a very annoyed third party.

Medical research has a bitter history with bumping up against the acceptable limits of intellectual property law.  Probably 90% of all articles about this upcoming case highlight the work of Jonas Salk and the polio vaccine he developed.  I've never done any in-depth research on the man, but it seems as though (from an outside perspective) that he was about as benevolent as they come.  The vaccine he created, for example, was subject to patent law.  It was an engineered substance manufactured through many hours and labor and research, consisting of a unique formula invented by Salk in his laboratory.  What's most miraculous about the man, and what even extends beyond the fact that he cured the major disease of his time, is his decision not to patent his vaccine.  When asked for the rationale behind his decision, he famously said, "There is no patent.  Could you patent the sun?"

Well, you could, according to the defendant in this case, Myriad Genetics, as long as you isolate it.  And since the sun looks plenty isolated to me, I'm going to go ahead and snatch that up.  Any time you go outside after today, you're going to owe me a lot of money.  But I digress.  Like I said earlier, as a general rule, naturally-occurring substances and living things are not subject to IP law.  Viruses can't be patented, because they're alive and naturally-occurring.  But vaccines that use viruses in their formulas can be patented.  Even genetically engineered viruses can be, and are, patented.  As long as the patent includes a material invention that isn't a derivative of a previous invention, it's legal.  A modified form of anything organic can be patented, but the original thing itself cannot be.  This makes it so that several people can be researching a cure for AIDS at the same time, for example.  The AIDS virus can't be patented, but the unique research and therapies manufactured by various research teams can be.  Therefore, until now, it's generally been agreed upon that nothing organic could be patented unless significant work has been done to create a new, previously nonexistent substance.  Biotech companies have been ignoring this rule for years, though.  Now it's caught up with them, and the Supreme Court will make the final decision about whether or not organics are subject to patent law.  Myriad is arguing that the physical act of isolating genes allows them to patent the genes they isolate.  Granted, I don't know much about what it takes to isolate a gene, but I don't much care either.  I could isolate a rhesus monkey from its friends, but I'd probably be met by uproarious laughter if I told people I intended to patent it.  If this argument holds, you could patent anything, as long as you do the work to get that thing by itself.  Fair warning to the next girl I take out to a nice sushi dinner and thought-provoking film; consider yourself patented, sweetheart.

What makes this case particularly alarming, and why it's coming to a head right now, is that Myriad Genetics currently holds the patents to the two BRCA genes -- the genes heavily linked to an increased risk of breast cancer in women.  Keep in mind that there are several genes linked to an increased risk of other cancers that are also patented.  What this means, at a very basic level, is that Myriad Genetics controls every single thing associated with the BRCA genes.  If you want to be tested to see if you're at an increased risk of breast cancer, guess who gets your money?  If you want to be cured of breast cancer sometime in the future through emerging genetic therapies, guess who will be getting paid for that?  And since no one else is allowed to set foot in the BRCA arena, they get to charge whatever they want.  This keeps the costs of testing very high and inaccessible to most people.  I've looked into genetic mapping once myself, not for breast cancer, obviously, and found it to be very expensive.  A large part of the cost can be attributed to companies that own the parts of your body you're looking to have tested.

Aside from the economic issues associated with holding a monopoly on parts of a person, there are several moral implications as well.  Last I checked, owning people was outlawed a long time ago, by a fine gentleman with a sick beard and an address that took him to a place called Gettysburg (that I'm guessing he got from GoogleMaps).  Basically what these companies do, is go around looking for significant research that determines a link between specific genes and cancers, and buy them out and patent the genes.  Suddenly, if anyone else decides they want to work on curing that particular cancer using genetic therapy, they have to apply to the company that owns the patent for a license to do so, and pay for the license.  This practice limits the ability to pursue research into curing certain types of cancer -- research that should be widespread and accessible to anyone who wants to try their hand.

Gene patenting is a practice perpetuated by the very same people that ruin capitalism time and again for all the rest of us.  It seems pretty obvious to me, as a writer, that from a legal standpoint no one should be allowed to own something they didn't create.  And from a moral standpoint it looks pretty straightforward, too.  If you're deliberately limiting the ability to further medical technology and alleviate the suffering of millions of people, you yourself are a cancer.  May the ghost of Jonas Salk haunt your days forever.

There's plenty more I could write about this topic, but I hope I've provided a good introduction to the controversy that is gene patenting, and at least a few good reasons as to why you should be really, really pissed about it.  Right now, cancer is at the vanguard of the argument, but there's solid evidence to suggest that many, if not most, aspects of our physical and intangible natures are determined by our genetics.  In that case, we all have a very real incentive to nip this in the bud now, or gene patenting will open the door to a world where you'd have to purchase a license to have brown eyes, or be a specific height.  I'll be following the Supreme Court arbitration closely going forward, and I'll do my best to post updates as the situation develops.  As always, feel free to correct me if I'm wrong, or contribute to the discussion.

Tuesday, April 2, 2013

How To Survive Cancer: Part 2

There is, of course, a lot more to it than that.  Yet, even with all of our 21st century medical knowledge behind us, there's still only so much we can do.  And if you think that cancer is a "battle" that you can win, please see the following: http://zenofmetastasis.blogspot.com/2013/03/honk-if-youre-hero-ps-you-are.html

But there are a few practical things you can do after a cancer diagnosis that will give you the best chances right from the start, and I'd like to go over them here.

1.)  Seek out the best doctors you can find that specialize in your type of cancer.  This probably ties as one of the most important things you can do.  Do it quickly; don't waste time.  The minute I got my diagnosis, I was on the phone scheduling appointments.  However, I wasn't in my right mind, and I didn't even think about finding the best possible doctors available to me.  When my mother got wind of things, she immediately researched the melanoma gurus on the East coast and called to get me appointments.  I had to cancel all the plans I'd made, much to the chagrin of the administrative assistant who'd helped me schedule them.  So, do yourself a favor, find the best doctors right away, or run the risk of having your mother do it for you.

2.)  Find your support network.  This is the other step that ties for most important.  You cannot suffer through the terrors of cancer without a support network.  Period.

3.)  Do your homework.  Don't blindly follow along with any treatment plan you're given without reading into it extensively.  I had a bit of insurance trouble throughout, but living a middle class American life, I was entering into a veritable wonderland of technological and medicinal options to treat my cancer.  However, many of these options are touted by the people who fund them, and they may represent particular agendas that don't include your best interests as a patient.  Be aware that we live in a complex and morally ambiguous world.  Do your own research and be your own advocate.

4.)  Make lifestyle changes if necessary.  I had been smoking when I got my diagnosis (a few cigs a day) and I'd been working a highly stressful job in the deep and terrible trenches of corporate NYC.  Most nights you'd find me partying my heart out, drinking away the stresses accrued during the day.  If you asked me now though, I'd tell you that it's easy to see how a "work hard, play hard" lifestyle falls directly into the realm of things with adverse health affects.  I'm not saying you shouldn't have fun.  In fact, I'm a big believer in the importance of fun and adventure, just be careful that you aren't seeking out your fun as a means to distract from all the bad parts of your life.  Of course, lifestyle alone is not going to kill you, for the most part.  There are certainly behaviors that are more dangerous than others, like smoking, or chowing down on discarded, depleted uranium cores.  However, there are those miraculous individuals who do everything wrong and still live to be a hundred.  These people are few and far between though, and no one knows what makes them so resilient (if they insist that they do, they're trying to sell you something).  In reality, until we know exactly what we should and shouldn't do on a genetic level, it's a good idea to lower your own risk factors as best you can.  It's very possible that the primary cause of most cancers is a genetic disposition (this is certainly true in certain cancers, if not all of them), combined with an individual's risk profile.  A genetic disposition doesn't guarantee that you'll get cancer, or that cancer will return.  But a genetic disposition aggravated by a life full of excessive risk factors just might.

Read more about stress and the immune system, here:  http://www.cancer.gov/cancertopics/factsheet/Risk/stress

There are other, optional things to keep in mind also.  These are things you can do in addition to the list above, and may or may not jive with your current goals.

5.)  Move home.  Be wherever your family is.  These people are important to you, or they should be.  Maybe you're estranged from them.  Well, fix it.  Having been diagnosed with cancer, you now realize that life is much too short.  I was fortunate enough to have a very supportive family throughout my life who were there for me during my surgeries and treatment.  I tried very hard to stay in NYC and go through this without them, but I quickly realized that I couldn't, nor did I have any right to deny them precious time with me in case I might be dying.

6.)  Find your friends.  My friends are everywhere.  I hated leaving the ones in NYC.  They had become a second family to me.  When I moved home to Pennsylvania though, I quickly fell back in with the close-knit group I'd grown up with.  And I had new people connect with me to show their support, too.  Some I'd never talked to before, and some I hoped to talk to much more.  One of the best things about cancer is that you'll quickly find out who in your life really belongs there.  Some people will disappear.  And others will be more supportive than you could have imagined.  These people, the ones who stick with you, are the ones you need to survive, and not just through cancer.  Carve their initials deeply into your heart, and make sure they know how much they mean to you.

7.)  Find your religion.  I don't care what it is, and I'm not going to tell you about mine.  Most people wouldn't appreciate it if I did.  And that's fine, because it's for me, like spiritual beliefs should be.  They're personal beliefs unique to each individual, and we use them to find our place in the universe.  And don't push your individual religion on someone else once you've found it; that doesn't make you "pious."  But do use your beliefs in whatever way you need to help you overcome your fears and live a more fulfilled life in the face of your diagnosis.

8.)  Quit your job and do what you love.  This one's simple.  There are many who don't have this option available to them, but sometimes it's easier to focus on dealing with the side effects of treatment rather than on your career.  If you can afford to, do it.  And, if you hate your job, do it with a smile on your face.  Afterward, go after that thing you've really wanted all your life, and make no excuses until you get it.

9.)  Reevaluate your priorities.  That is, if you haven't already done so.  I did so immediately, within nanoseconds of being told I had cancer.  I cataloged my greatest sins, and set out to atone for them.  Usually, our greatest sins are straightforward and easy to identify.  Mine was.  And if you have the energy, don't just identify your failings, set out to fix them.  Then, seek out the most important people in your life and tell them about it.  Spend as much time with them as you can.  Find the other things in life you know to make you happy, and don't ever lose sight of them.

I set out to write a guide about surviving cancer, but I realize that a lot of these things aren't cancer-specific, and you should probably be doing them anyway, regardless of what diseases you have or don't have.  Or, if you hate all of my suggestions, that's okay too.  Because this was my guide, and it consists of all the things that were important to me throughout my experience with cancer, and still are.  But please, if you take nothing else from this, use it as inspiration to find your own guide.  Because there are important things in your life that you can't live without -- I know there are.  And if you haven't figured out what they are yet, take it from me -- If you wait until you might be dying to find them, you'll end up having a lot of apologizing to do, and mostly to yourself.