Tuesday, June 25, 2013

Cancer Crazies

I've been lucky enough so far to avoid the cancer crazies.  I feel extremely fortunate that this has been the case.  If ever confronted by such a person, I'm not entirely convinced I'd be able to remain civil.

Cancer is a series of genetic or epigenetic malfunctions.  It's not a spiritual or emotional disorder.  You don't get cancer because you're a bad person, or because you've built up too much karmic debt, or because you slept with your best friend's aunt's room mate's boa constrictor.  And stress may certainly be a factor in lowering immune response and aiding in the progression of disease, but negative thoughts alone, launched out into the cosmos, are not going to be flung back to you a hundredfold by an advanced race of ancient aliens with a bizarrely vindictive agenda.  I almost promise.  Besides, they're too busy experimenting on my reproductive organs as I type this.  Did I say organs?  Plural?  Yes, I've been enhanced.  By aliens.  

There is also no cure for cancer.  This is terrifying, and a lot of folks can't handle information like that, even if they've never experienced the disease personally.  Death anxiety inspires a lot of funky behavior, including the urge to make shit up for no reason, as well as the urge to be taken in by said made up shit.  

Logic, please.  Cancer sucks enough as it is.  Survivors feel bad enough already, and they could do without you berating them for not drinking your potion made of camel jizz.

Source: Whitemans Wildlife Park, Perth, Australia

Friday, June 21, 2013

Extreme Harmony

I want so much to forget all of this.  I want that more than anything.  But I know that if I did; if I were to put this all behind me and live as if it never happened, it would be the single most selfish act of my entire life.  Just because I was lucky enough to have survived, that doesn't mean I can ever walk away.

Writing about my experience with cancer brings back painful memories with every word.  Engaging in the cancer community, and finding all of these wonderful people whose lives have been touched by the disease is both a blessing and a curse.  It brings me closer to all of you, knowing that we have this shared experience.  And it brings me closer to humanity, knowing that such suffering isn't only possible, but commonplace in the world.  It identifies and exposes the human condition in greater detail than anything else could.

This is what inspires me to act -- the fact that everyone goes through something, which is an important thing to be mindful of in the first place, but even more so when you've just been through something pretty terrible yourself.  You have the option to step back into the mainstream, that winding and disorienting wormhole of people and energy shooting off ceaselessly into the future, back into the routine, into the grind, the rat race, the series of events and reactions and self-decrees that we call everyday life.  It certainly takes a while to get back to that place, back to "normal," or what was once normal for you, but I'm finding out that it's entirely possible.  When I talked to people while I was going through treatment, people who were a few years out who had already been through the same ordeal and had left most of the pain behind them, I was exposed for the first time to individuals who had regained normalcy in their lives.  I couldn't, for the life of me, understand how they'd done this.  It was such a foreign concept to me.  And I wasn't even happy for them.  In fact, I was irritated.  I thought about my feelings, and how I'd been so miserable, so life-alteringly miserable, and knew in my heart that I'd never be where they were.  I'd never be satisfied again, and I'd certainly never be able to hold a job again or have successful and fulfilling relationships, not with the dark cloud of what had happened following overhead.  Those thoughts seem so far away now.  I've been reintroduced to levels of normal in my life that I never thought I'd see again.  And I've also realized that it's okay to embrace them.  It's okay to allow myself to be happy.  I don't have to take the whole weight of cancer on my shoulders, all by myself.  I can do my thing and help, and I can also be happy.

But that's just it; I have to help.  I can't sit by while others are dealing with this and worse, and allow it to continue without putting up a serious fight.  Which brings me to option number two.  Option two is where I was, sitting alone in my room, writing up a storm about my experience, all nicely packaged together in book form (which will hopefully be seeing the light of day soon), that I would use to garner awareness and attention, and build a platform from which I could enact change and better the circumstances of those who were not as fortunate as myself.  There are some people in this world who have no advocates, and who are lost, and who have no hope.  This is unacceptable to me.  I was going to fix it.

I still am.  And I would be extremely pissed at myself if I didn't follow through here.  The need to do so outweighs any threatening complacency a million fold, so I don't really have a lot to worry about.  I don't have to hole up anywhere and work myself to the bone, focusing on nothing but the misery and the task at hand.  There is, I'm finding, a third option: a Middle Way.  And that is, as I touched on earlier, that I can focus my energy on enacting change and bettering the world, and find personal happiness and fulfillment at the same time.  I want others who are going through this and don't even remotely understand what it means to accept "normalcy" again, to know that it's okay to learn to be happy again.  It's okay to be happy.  You'll find happiness in old things in different ways. And it's okay to embrace that.  It's okay to own your new life.  You have passed through a checkpoint, a weigh station, and you've seen things others never will, and that has shaken you to your core and caused you to reevaluate and reconsider just about everything you've ever experienced.  But there are some experiences that will still translate, and that will be all the same, or even enhanced by this.  And they are...

Love.  Self-worth.  Fulfillment.  Happiness.

If you're anything like me, you'll isolate yourself from the possibility of ever finding these things again.  I had resigned myself to being miserable, although I would have argued that I was steeling myself and making the necessary sacrifices to meet my goals.  I now know that it was unreasonable to put myself through all that I did, but, I needed it at the time, and it was useful to my growth, and I wouldn't trade that time for the world.  I got a lot of work done, both tangible and intangible.  It was a time of significant development and the beginning of a gradual process of healing.  I'm proud of myself for having such discipline and fortitude at a point when I needed it most.  This is not to say that I immediately took to my self-care responsibilities right away, or with any sense of ease whatsoever.  In reality, I spent the good part of a year curled up on the couch, covered in a snuggie.  But that was part of my process.  If you happen to process tragedy that way, curled up under a snuggie, then that's okay.  I went from severe "handling" mode, to severe couch mode, in the span of a few months.  I shut down because I couldn't filter all the terrible information that was running through my head, like the vile tributaries of a vast and poisonous river.

It's okay to come to terms with all that, and the fact that you've gone through it.  And the fact that you are or will some day come out on the other side.  Being happy or accepting happiness is not a denial that something awful has happened to you -- quite the contrary, I'm finding out.  It's an acknowledgment of the experience, and a nod to your new-found perspective.  Life is short enough as it is; we should embrace all the love, self-worth, fulfillment, and happiness that we can.  You might stumble around aimlessly until you find it, like I did, or you might suddenly get back on your feet and know exactly where to look for it.  In truth, there's no right answer, and no guidebook for finding happiness after a tragedy.  Normalcy is a lie ordinarily -- it doesn't exist -- and even more so after you have your life threatened.  Normalcy is a quest, more than it is a concrete state of things.

Thursday, June 13, 2013

If You Strike Down Gene Patents, They Will Return More Powerful Than You Can Imagine

Today, the Supreme Court decided that logic is important.  And that's good.  So, thank you, SCOTUS (which I occasionally read as "scrotum" when I'm scanning through articles too quickly).  Thank you for striking down patents on human genes, unanimously, mind you -- definitely didn't expect that.  It's like you all suddenly said, "Hey, Myriad Genetics didn't invent these genes, they kind of just exist in my body right now without anyone's help."  Which is true.

Myriad fought hard, with the whole isolation argument.  And, like I said before, if that's how the law works, as soon as I isolate my lady friend on our next date, she's fuckin' patented.  I'm paraphrasing, but I think this could be exactly what Myriad's legal rep had to say about baseball bats, or something dumb like that: "It's the same as when you isolate a baseball bat from a tree.  You need to know where to start and stop to make the bat.  You know, because by making it in the first place, it's not like the bat represents an original product of human invention, since I see these things littering the ground every morning after the wind blows.  They're just falling out of trees left and right.  Products of nature, baseball bats are.  The MLB just figured out how to isolate them.  They lured them out with sunflower seeds and human growth hormone, I think, at the start."

A lot of news outlets are reporting on this decision in the normal sensational, buzz-generating way (shocking).  I guess it helps views/ratings, but maybe the simple truth would, too?  Here's the rundown: Bloomberg says "Mixed ruling for Myriad."  Forbes says "The Supreme Court strikes down gene patents, with a major exception."  This is totally misguiding, because really, there are no exceptions, and there was no mixed ruling.  The manufactured confusion here is the question of whether or not synthetic genes were subject to patent law.  Which, of course, they are.  Any original creation can be patented.  The "exception" is supposed to mean that synthetic gene patents are allowed.  But, like I said, they should be, and this isn't news.  The news is that we've cut through Myriad Genetic's BS about how isolating something makes it subject to patent law. As to the Bloomberg article, I don't know how a statement about a "mixed ruling" applies at all to a case involving a unanimous decision.  I'm guessing for the same synthetic/non-synthetic question.  The mixed ruling is that synthetics are allowed?  My point is that they always have been.  And patenting naturally-occurring substances has never been allowed.  So... where's there a mixed ruling?  I'm assuming that the acoustics aren't very good in the courtroom?  I'm just saying, it's a big ornate building with a lot of fluff, and it might create some reverb or tremolo, and some members of the press core certainly may have heard: "After successfully determining the very clear language of the law to be exactly as it reads, we hereby count this as a mixed ruling."  But I find that very unlikely.  Mostly because you can read the full text of the decision by Justice Clarence Thomas on the interwebs.

I don't know what else to say about this, other than thank you, SCOTUS.  There are a lot of interests at play here, as in all cases that reach this level.  Sometimes, we luck out, and the bottom line is the right thing, and it ultimately gets done.  This is one of those cases.  There are still many issues and obstacles related to this case, the results of which are yet to be determined.  Only the future will tell what new battles will crop up on the horizon.  When we know, we'll fight them, too, until people and patients are treated fairly and reasonably and health care and related services are readily available and affordable to all of us who need them.  As a personal note, I will be getting my genetic profile done as soon as there is an affordable option.  With the fall of Myriad's gene patents, competition will drive the cost down and I will soon be able to do so, along with millions of other at-risk individuals.  Until then, I will leave you with a quote from the Forbes article that sums things up pretty well, in my opinion:

“'It’s one of these situations where candidly, it just makes me sad there isn’t a higher level of basic biology knowledge in the world,' said Brenda Jarrell, a Ph.D biochemist and partner with at Choate, Hall & Stewart in Boston. 'Unfortunately, this is the Supreme Court.'”

I Can't Get Enough of this Water Stuff

On a night much like this, when I've once again succumbed to the numbing and emotionally murderous wrath of alcohol poisoning, I take a deep, raspy breath and think to myself...

I can't get enough of this water stuff.

Water -- it was my constant companion for over a year.  In various forms, including sports drinks and uber-hydrating liquid goodness.  Water.  Water.  Water, water, water.

I'd like to talk about this nourishing liquid as a biological necessity, and also as a symbol of the ordeal in which I found myself.  And I'd like to do so in the form of a personal letter, addressed specifically to the clear, satiating beverage.

Ahem.  Here I go.

Dear Water,

You have been my constant companion for over a year.  And, if you want to get technical, I guess forever, too.  Because I hear the majority of me is made of you.  Moreover, I think that if someone were to squeeze me very hard, and diligently, a large amount of you would squirt out of me in various directions until I was the shape and consistency of a deflated inflatable tubeman.  Crazy.

Anyway, thank you.  Thank you for being the life-saving goodness you were evolutionarily designed to be to my corporeal body.  I think that's actually repetitive, but you get the picture.  Simply put, you are awesome.  I drank at least sixty-four ounces of you per day for an entire year.  It's odd to think about, because the average human person creature is supposed to hydrate with upwards of sixty-four ounces per day, but I don't think I have ever actually met that goal at any other point in my life.  And that's because it's ridiculously hard to do.  I had to force-feed (force-drink?) myself large amounts of you at a time until I thought I was going to explode, and my parents would have to mop up the bits of me that stuck to the walls and clung to those hard-to-reach corners of the house.  I remember the intense subconscious paranoia of those days, and that at one point how I thought I'd actually killed myself by means of water intoxication.  Did you know that if you drink too much of you, a person can actually die?  I didn't, but Google made sure that I knew about it.  Thanks Google, for feeding into my crazy when I needed it the least.

My year of Interferon treatments and drinking of you into my very soul was extremely rough.  I can't hide that, or not admit to it anymore.  I hated a lot of it.  I hated you, Water.  It amazes me how quickly my perception of you turned around, to be honest.  How quickly I was able to say, "Well, I had enough of you times ten, but I still kind of need you to live... Well okay, you aren't so bad... Oh lordy, you taste fine... Give me some of your goodness... That's it, get in my veins."

After the Interferon treatments ended, I was sent to the hospital with intense pain, only to find out I had a kidney stone.  Do you remember that?  It was probably caused by the interferon, due in part to dehydration (figure that out, you liquid nightmare).  And then, just when I thought you were out of my life forever (or at least until I was thirsty again), there you were -- and in large, ungodly portions once more.  I stocked up on you like I was anticipating the end times.  All available counter space was filled with bottles of you.  Bottles and bottles and bottles and bottles.  I could have kept several families alive for centuries with the amount of you I had to drink.  "This will flush out your kidney stone," they said.  "Just drink a lot of water," they said. "Hey," they said, "Are you drinking a lot of water?"  I laughed.  "Fella," I told them, all morphined up and feeling pleasantly disassociated with my circumstances, "If you knew how much water I'd been drinking, you would dig canals in me and found a city called New Venice."  Needless to say, Water, my dear, you did not work very well in this particular instance.  Or the original instance, now that I think about it.  Otherwise, this second instance would not have been compounded upon the first.  Hmm... Yeah... Water... What it is a good for?

And yet, after all of our complicated history, here you are in my hand (and mouth, and [insert part of the throat that swallows because Wikipedia is unclear about this], and stomach, and bladder) again.  I can't quit you, it's just too hard.  In my more vulnerable moments, I must admit that... I need you.  There, I said it.  Shit.  Can we move on now?  Can we have a normal relationship at this point?  In truth, I need to know that you'll be there for me when I need you, but also that you won't smother me by means of water intoxication.  Maybe what I'm saying is... I love you... but I'm not "in love" with you.  Not anymore.  You were there for me when I needed it, but now I need someone else.  It's true -- and I'm sorry. What can I say?  I'm a complex man, with a lot of layers.  You really only penetrated down into one, or two, or whatever, I'm not a scientist.  There's a girl now, you know, and that's going well.  So I think maybe we should call it quits.  Let's just have what we have, if that makes sense, and go our separate ways.  It seems like your separate way involves the majority of surface area on the earth, so I doubt I'll be able to successfully avoid you for long.  But, ya know, I'm glad we've been able to calm things down a bit, and I'd like to continue that trend.

Thanks Water.

Yours always (and by that I mean only when I absolutely need you),


Thursday, June 6, 2013

Cancer Kid: A Story of Tragedy, Upheaval, and Resilience

The new book is becoming more of a reality every day.  Yesterday I had my standing appointment with my oncologist, who is featured in the book, to find out that he loved the advance copy I'd sent him.  He was very excited that I'd taken the initiative to write this, and his enthusiasm about the awareness and attention I'd be garnering for the melanoma community was infectious.  I felt vindicated, and relieved.  All the work I've done, I thought, it means something.

Today I got through another round of edits.  I have to admit, editing this book is the hardest thing in the world.  It dredges up memories and images that I try to keep in check most days, but when confronted by them directly I can't hold back the emotional floodgates.  It usually takes about five minutes for me to start tearing up.

I find myself saying repeatedly at times, "Jesus Christ, don't do this to yourself!!"  But I have to -- I am obligated.  And it is my choice.  I wrote this for important reasons, and revisiting the pain now and again is something I can deal with, and also something I owe myself.  It's vital that I read my own words sometimes, and remember how I felt during the time I faced an uncertain future.  It will continue to be a guide moving forward in my life.  And I hope it can be a guide to others as well.

I'm in the process of wrangling the last few permissions for quotes and other material used in the book, as well as doing my best to find a traditional contract for the book.  I'd like to see it get the widest distribution possible, in order to do the most good.  It will also help to secure the funding for future projects I'd like to complete, including a few followup books and a foundation.

I want to thank everyone for their support.  It's been quite a ride.  But you all have been very helpful, and have been behind me all the way.  It's a wonderful feeling to know that what I'm doing means something to others, and that if I really want to, I can help to make the world a little better.

We'll see how it goes.  I'll keep you posted.