I Wrote My Will at 26

"And my collection of geographically accurate boogers goes to..."

I wrote my will at the age of 26.  It's infused with comedic zingers, and is in no way legal -- but hey, it's a will, nonetheless.

During the period leading up to my second surgery, after I was diagnosed with cancer at 25, I wrote what would become a symbolic offering of what little I had in those days.  I wanted to have something in writing that would tie up all the loose ends in my young life.  Turns out, having lived only a quarter of a century, there weren't very many loose ends to worry about.  Though I'd heard that it's better to have something in writing than to check out without making any kind of arrangements.  Turns out that isn't entirely accurate, but I didn't know that at the time.  So I drafted this letter.  No one knows that I did this, not even my family.

At the time, I was doing a lot of sitting around and feeling sorry for myself.  I laid on the couch at my parents' townhouse, watching TV, curled up under a snuggie, slowly losing the ability to cope with my evolving circumstances.  Mostly though, I was feeling sorry that I had to leave my family, and that I had nothing to offer that would soften the blow.  The thought of dying so early, loved ones gathered around to bury me, their faces twisted in mourning, was too much to bear.  It spawned thoughts of my parents splitting up, my sister's new marriage falling apart, and all three of them slipping further into the depths of grief, never to return.  And all that would be my fault.  I would be the cause of so much suffering for the people I cared about most.

My parents were getting older, and money was getting tighter and tighter.  My sister had gotten married during the summer, two months before I was diagnosed with cancer.  Mom and Dad paid for the majority of the wedding.  Shortly after, they'd sold my childhood home and bought a townhouse an hour up the road in State College, PA.  In doing so, they signed on to another mortgage, late in life, against their better judgment.  None of this would've been a problem, had I not shattered the illusion of youthful permanence and gotten myself all genetically mutated.

"There's a pen growing out of your brain, just like this."
Source: National Cancer Institute

The day of my first surgery was the day my parents closed on the new townhouse.  I sat in the office with them, that morning, listening to small talk thrown out by the lawyer and the real estate agent, all the while doing my best to remember that life hadn't stopped for them as it had for me, and they didn't have any idea that directly following this appointment I was hopping in the car with my family and traveling three hours to Pittsburgh to go under the knife for the first time in my life.

I also knew that this was cancer, and that it could very well be terminal.  That thought never left my mind.  I wanted to reach over to the console and hit the reset button like I'd done so many times as a child, sitting cross-legged in front of the TV in the basement, controller and princess-saving aspirations in hand.  But there was no reset button in my case.  I would be forced to deal with whatever came next, no matter how horrible.

Now that I think of it, Kirby kinda looks like a tumor...
Source: Andrew Evans

The possibility that I wouldn't make it loomed over the car on our drive to Pittsburgh like a dark cloud, hovering like a silent threat.  For a long while, I was able to stare right back into its core, challenging its authority over me.  Clouds like that cut through to your soul, and wear down your courage over time, until you begin to see the world, and the possible end of yours, in a more practical light.  "Well," you eventually say, stealing a glance at the blackening sky, "Maybe now it's time to prepare for the worst."

I wanted to provide for my family, but at the age of 26, I had nothing to provide.  And I realized how sad it was that I had to write a will with no real "willing" involved at all.  The only thing of real value I could give away were the emotions I felt for the people who would read it after I was gone, and I spread them liberally throughout.  I needed to make sure they all knew how I felt.  And if I couldn't give them anything of material value, I would leave my family and friends with a message of undying love.  I didn't want to leave my family without giving them something in return.  They had given me so much already.  Thoughts of Indiana Jones and the Temple of Doom ran through my mind, and the introductory scene where Harrison Ford is stealing a jewel and replacing it with a bag of sand to avoid setting off the trap.  My family had handed me a great jewel -- a lifetime of opportunities, love, and support, and I had only this crummy bag of sand to offer in return.  It didn't work in the movie, I thought, and it won't work now.

My 26th birthday was spent hobbling over to my sister's house for dinner, ice cream cake, and presents.  I was still healing from that first surgery, which was actually a two-fer that included separate procedures.  It was a combo situation like you find at family restaurants.

Me: "I'll have surgical combo A, please."
Waitress: "Would you like that with or without post-surgical bruising?"
Me: "Oh, I don't know.  What do you recommend?"
Waitress: "I recommend the bruising.  You won't be able to sit down practically anywhere, and you'll break the towel rack in your sister's house the first time you have to poop."
Me: "Interesting.  I guess I'll give it a go."
Waitress: "Excellent choice.  And how about a side of surgical drains?"
Me: "Hmm... I might pass on those this time."
Waitress: "Sounds good.  You make sure to try them next time."
Me: "Thanks, I'll keep the drains in mind."
Waitress: "I'll be right back with your IV and a pre-op syringe.  You'll be seeing pelicans and singing obnoxiously in the key of F in no time."
Me: "Can't wait."

"I'd like to avoid the anal leakage, if possible."
Source: Alan Light

I was uber sensitive to the situation in which I found myself.  I had just gotten through my first set of procedures to remove lethal cancer from my body.  I was just 26.  Though I'd dated a lot, I'd only had a few real adult relationships, I'd only had one real job of any import, I'd never made a splash, and at this point it was possible that I never would.  I had nothing to leave behind; I had no legacy.  My whole life, I'd wanted to be a writer.  I hadn't done much to pursue that goal, but I began to write a memoir about my experience with cancer.  And then I wrote a will.  I decided that I could write at least that much.  It was possible that I'd be dead, and the memoir would never be finished.  This will, or letter, would be my legacy.

And so I wrote the letter that would become my will, in the hopes that someone would take pity on me and see that my family survived the worst case scenario.  Because, at the age of 26, without any real prospects, pity was all I had.  Which lead me to thinking, "What should I have had at this point?"

I'll be answering that question in a series of posts that I hope will help shed some light on how easy it is to be prepared for life's worst case scenarios.  In Part 2, we'll talk about the legal issues associated with end-of-life situations, as well as what the average, healthy person should have in place.

My Independence Day

Happy Fourth of July!  Happy Independence Day!  Happy Will Smith movie marathon day!

As with most July 4th holidays, images of barbecues, fireworks, and fireflies are running through my mind.  I remember one year, lighting snakes outside my childhood home for hours, and being told not to run with sparklers.  I ran with them anyway, because the patterns they burned into your retinas after being waved haphazardly through the air were worth the risk of second-degree burns.  Maybe you disagree, but as a ten-year-old, I liked to live on the edge.  When no one was looking, I sometimes ran with scissors, too.

Another year, visiting family out of state, my uncle decided to entertain us with his own fireworks display, using what I can only estimate to have been military-grade explosives, and ended up blowing a decently sized crater in the end of his driveway.

The last few years, I'd been going to see the fireworks display in State College, Pa, which is extraordinarily beautiful, and timed to a score of tunes that set your heart pounding (if you could tell the difference between your heartbeats and the reverberations from the fireworks exploding through your body, that is).  This year will be my first Fourth of July where independence has a particularly strong meaning in my life, and I intend to spend it with someone who embodies my hope for the future, in an adventure to upstate New York.  In a break of tradition, I'll forge a new association with Independence Day in my mind, and create a new standard of living for myself without the threat of terminal illness hovering over my head.

Because, you see, I have this keychain.  On the front of the keychain, my initials are engraved in large capital letters.  And on the reverse side is a date with a ribbon.  The date is 12-1-12.  My parents bought me this keychain and handed it to me the day after I was finished with treatment for stage 3 melanoma.  That day was December 1st, 2012.  Now, for some reason, the coming of Independence Day this year has triggered that memory in my mind.  It's made me recall how I felt when I was finally done with immunotherapy -- the relief, the uncertainty, the conquest, the hope, and all the whirlwind emotional static that clung to my neural pathways and wouldn't let go.

Today, Independence Day means something more for me.  It's an independence from cancer.  It's a day I can celebrate and remember the time I was handed a keychain, and told that I had earned my independence, if not only for a short time.  Because I was lucky enough to have gotten through my ordeal, that doesn't mean that it'll never threaten my life again.  It means that I now have the opportunity to appreciate my independence from tragedy with every new breath, and every sunrise.

Feeling independent from political tyranny suffered two hundred years ago is one thing, and celebrating the birth of a nation is a worthy cause that should never be taken for granted.  But there are other things that are important to feel independent from: things in life that are just as tyrannical as an oppressive colonial-era government, if not more.  I've told you what I feel independence from, and that gives me hope for the future.  Not to live a life for a certain amount of years, but to live with a certain amount of fulfillment.  To be able to fully enjoy my time independent from the terrible disease that haunted me in the past.  And I know that it may come back some day, but for now, I'm going to enjoy my independence.  I hope that even if it were to return, I'll still maintain some small wisp of this same attitude, whenever I flip over the keychain that my parents handed to me, and gaze at the date when I truly gained my independence, and for the first time really understood what it meant to do so.

What's your Independence Day, if you have one?  And, if not, what is it you wish you were independent from, and how can you make this happen?

"Natural" Healing, "Alternative" Medicine

I'm getting increasingly tired of the number of "Natural" and "Alternative" health accounts I've accidentally followed on Twitter.  You guys are crafty.  You do your best not to look crazy right away, and present yourselves in a medically authoritative way.  Seems like that's working for you.  But then I start to see the kind of articles you post, and I realize I've been taken in.  You post things on Twitter with titles like: "(Rare bit of foliage) will make every aspect of your life better!" or, "Now, rub potato skin on your genitals to make women want you!" and, "XYZ will treat cancer, heart disease, diabetes, MS, lupus, the common cold, stretch marks, a stubbed toe, pinkeye, indigestion, testicular chafing, and having no one in your life who loves you."

Or, my favorite: "A new study has shown that mainstream medicine is a conspiracy, and the only substance of any actual medicinal value is a smoothie made with sloth toenails."  Just what studies you pull from, the world will never know, because you never, ever, cite them.  And when you do, they're not in English, and are written by people who are not medical professionals.  In the last article I read, the author actually thought it appropriate to cite "anecdotal evidence" as source material.  As in, "So-and-so said he felt much better after taking the pills made of dragon spines, and everyone in his life noticed how happy he appeared at the pancake breakfasts.  He is still very much dead, but the dragon spine pills totally work.  Please buy them."

I keep following you until I get just disgusted enough to leave your nonsense behind.  Because I truly believe that it's better to be aware that you're out there, spreading fear-mongering sensationalism to line your pockets, so the intelligent human beings among us can be prepared to deal with you.  Even so, after about halfway through most articles, I click "unfollow" on whoever posted that particular batch of pseudoscience.

Articles about alternative medicine are usually written by people who haven't responded well to their own diagnosis, or people who have absolutely no idea about the true horrors of facing a health crisis.  The former usually have bios like: "Karen Ladypants was diagnosed with an incurable terminal illness, but cured herself by eating a steady diet of whale placenta."  No, Karen, you didn't -- and fuck you for misleading people.  The latter bios often contain more acceptable information, and belong to people who have become invested in the epidemic of the American food industry, and go something like this: "Lulu Treebeard discovered in 2009, that everything you come into contact with in daily life is made from synthetic chemicals supplied by greedy corporations that pushed the Lorax into retirement.  She has adopted some fringe beliefs and now dedicates her time to promoting a healthy lifestyle, along with her husband and one very socially awkward son."

Let's be fair; there's nothing wrong with promoting a healthy lifestyle.  There isn't even a whole lot wrong with denial.  Promoting a healthy lifestyle is exactly what this author aims to do.  But I like facts, and because of that, you won't find me buying into anything for which there's no evidence of any benefit.  There is something wrong with pushing things that have no medicinal value, and that are occasionally dangerous or that cause the opposite of the desired effect.  I also consider it unethical to promote a product that has no known benefit, even if it isn't physically dangerous.  Because, in doing so, you are manipulating consumer fears to make yourself richer.  All of the darkest corners of economics can be found in the neighborhood of healthcare.

In terms of denial, or not fully adjusting to the new normative state you've entered through a tragic diagnosis or other event, I should first say that I completely understand.  I lived an entire year of my life curled up on the couch under a snuggie.  You want terrible things to go away, and you deal with that desire for a clean slate however you see fit.  But dealing with your own fears is one thing, playing on others' fears to validate your own denial is quite another.

This is what bothers me the most about the community to which I now belong.  In the midst of tragedy, you have a tremendous opportunity to help people.  In order to do so, you must have the courage to face the realities of your circumstances.  Cancer is incurable.  Science can't do it, the turnips in your backyard won't do it, either.  Man up, use the wisdom you've gathered from staring down the gates to the other side and make the world better.  Instead, these alternative health folks choose to increase the amount of suffering in the world by pushing placebos, or dangerous, ineffective treatments.

If it isn't proven to be effective, peer-reviewed, overseen by governing bodies, results recreated and independently verified, if there aren't statistics and survival rates and facts and figures, then you are doing something to your body and no one can predict the results.  Seek out alternative treatments only in conjunction with a conventional treatment regimen, and only if those particular alternatives have proven clinical benefits.

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.'”

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.

Who Am I?

I came out of St. Marks Market today, with a bagel in one hand and coffee in the other.  I crossed to the south sidewalk and passed a group of punkish-looking fellows.  One of them wore a black hood with the eyes cut out, and was eyeing my approach eagerly.  I was fully aware that I was about to have an interesting story to tell.

Sure enough, the man began walking backwards, gesturing wildly.  "I am famous for chopping off people's heads in the 1800's," he yelled, excitedly.  "What is my name!?"  I felt like it was a riddle straight out of a video game.  If I got the right answer, I thought, maybe he'd give me a special sword because it's dangerous to go alone.  My first inkling was actually to stop in my tracks and respond to the inaccuracies of his riddle.  "Well, actually buddy, you're a few centuries off," I would start, proceeding to launch into a chronological analysis of the tradition of western capital punishment.  It took a lot of willpower, but I simply mumbled "executioner," and went on with my day.  

This could be a fun story about how I view life in the city, and the availability of bizarre and thought-provoking material at every turn.  In a way, I think it is.  For me though, I operate upon the connections I forge during daily life, and this called upon an idea I'd had for some time.  It made me think right away about death, of course.  And how everyone is basically very cool with the idea, in the abstract.  When it has a face, and is a symbol, and categorized.  Here's a man with a hood, inaccurately riddling people in the streets to get his jollies.  He represents an idea, and as long as it remains within certain social confines, most people will probably not think twice about it.  Maybe one or two people he solicits will be uncomfortable and leave with a bad taste in their mouths, but for the most part, I imagine a lot of folks will be thoroughly entertained by the man's shenanigans.  

What is it about death that makes it so easy to deal with as a clear symbol, something brutally and often inaccurately portrayed in mainstream culture?  And what is it about death that makes it so easy to symbolize, so easy to make into a caricature and focal point of such intense negativity?  Death is a man in a black hood. That's good -- this man is a symbol and an automatic enemy.  Death can be a disease.  Even better -- you can fight a disease, engage in a battle, and come out triumphant.  It's often easier to fight a disease as a concept than a man in a black hood as a concept.  Because an executioner is state-sanctioned, and he's still a person, and we can identify with aspects of his nature.  We absolutely cannot identify with a disease, a ruthless and unflinching organism or state of malfunction within our own bodies, that has no personification, and simply doesn't care, because it doesn't think or reason, and it has no sympathy, and is not state-sanctioned, or sanctioned by any force that human beings can readily comprehend.  As a symbol, it can be broken down into polarizing and unrealistic interpretations and handled more clearly.  

Because it's easier to make a symbolic fight out of something than to face the full extent of its terror.  Cancer is very much a symbolic battle these days, much to the chagrin of anyone diagnosed with the disease.  We are not fighting a symbolic enemy, but attempting to survive with a condition that doesn't have motives.  That's a paralyzingly scary thought.  Death is a scary concept to most of us, and I firmly believe in Irvin Yalom's existential psychology -- I believe the man is 100% accurate in his conclusion that the highest motivating factor in anyone's life is the conscious or unconscious anxiety spawning from the fact that someday life will end.  I don't know that it isn't okay to create symbols that serve as focal points for certain emotions and fears, but it does seem a bit juvenile after my own experience with the real facts of death and dying.  

It's possible that there's a way to bridge the gap.  I believe the bridge will be built firmly from education and genuine awareness.  Self-analysis is of huge importance in matters relating to such extreme finality.  It's very difficult to be comfortable with thoughts that you believe by extension will threaten your very existence.  But if these thoughts allow you to improve your circumstances and that of others going forward, then it might be time to deal with your fears, because not doing so would be selfish.  It's okay to be afraid.  It's not okay to create limitations revolving around your fears that prevent you from dealing with reality, and force others to go along with that.  Soon there will have to be a real conversation about the ethics of death and dying.  I feel fortunate that I was raised by a family that was abnormally comfortable with the subject, due to the fact that my mother is a hospice social worker.  I've been addressing the idea in one way or another my whole life, mostly in an analytic and observational way, and then suddenly in a very practical way.  I feel that it's important to assemble the collective powers on this one, and find the sense of duty possessed by those of us who have faced the issue in a practical way.  We hold certain keys that can succeed in opening doors that are sealed with the utmost apprehension.  There's so much wisdom and hope that comes arm-in-arm with facing these issues in a practical way, and that needs to be expanded upon and shared.  It's a top priority of mine to find a way to do this that will succeed, and will benefit the baseline happiness and self-awareness of the human condition for generations to come.  

The Return

Every setback is minor
Unless you're dead
Check out that depth
My words cut deep, like a deep-cutting thing
This is my attempt at writing free-form poetry
About the events of the last few days
I think it's a bit unreasonable to assume this will go well
That would be crazy
So I've given up already

Here I am, back in the city, feeling at this point like I've never left.  Although, there are new undertones, some of experience and perspective, others of urgency and love.  I now see the city through the filter I'd always wanted to have.  That can only get better over time.  That isn't true, but I hope that it does get better.

I've finally injected myself into the survivor community, and while that's wonderful and I very much needed it, it serves as a flashback to memories that I'd much rather forget.  But I know I can't forget.  I have met wonderful people recently, people who make me feel welcome and understood.  But that "understanding" comes at the cost of gazing into the dark cloud surrounding all of us.

I'm terrified that I've gotten to a point in my life where I'm happier to be "normal" again than I am to pursue the goals I set for myself after my diagnosis.  The desperation I once felt had been fading for a long while, until just now, when I hung out with these fellow survivors who made me remember what it was I promised I'd never forget.  Even writing these posts reflects that -- I don't feel the same vulnerable honesty coming through in my words, and instead there's a natural tendency geared toward avoidance that's doing the rounds in my mind, sweeping aside any painful thought.  But those painful thoughts are necessary to process, for the life that I'm committed to lead.  And right now I'm feeling very uncertain about how my mindset will take shape in the future, and afraid that I'll lose something that's been so important to me, even if that something is very negative.  Should you let go of negativity?  Even if it's a driving force in your life?  I think it's better to incorporate its lessons, and move forward as a more complete person.  And that is my hope for myself.

I wonder if any of this is actually readable.  I'll sum up.  Letting happiness define the future, as opposed to what I'd been doing, is troubling right now.  Because I had forged ahead using certain tools for so long, that were made completely out of the emotions revolving around so much negativity.  And now I have to mingle the two, and hope I can craft an emotional cocktail that plays well with my soul.

If you've had a similar experience, I'd like to hear from you.

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.  

How To Survive Cancer

Hope

Goodbye Arijit

Recently we lost a beacon in the dark.  Arijit Guha, my first young adult cancer survivor role model, died yesterday.  There are times when words fail us, and this is one of them.  Sometimes it's better not to say anything, so I will be brief.  We are as angry as ever, but we remain in debt to a life spent in the service of others, and respectful of its end.  I can only write these words now because the news is fresh and hasn't settled.  If I stopped to reflect on what I was saying, my words would fail me.  I find I'm at a loss.  Because today, we've all lost.

I hope you find your rest, Arijit.  You certainly deserve it.  I have a strong feeling though, that you will be fighting for us still.  And I for one would be ashamed to sit back and let you bear the burden all on your own.

If you didn't know Arijit, you can find his blog and read about his story here:  http://stageivhope.wordpress.com/

Today, I find myself in deep introspection.  Arijit was a hero, and I was fortunate to be aware of his presence on the Earth.  It's made me a better person, and helped define my own journey through life.  I still don't know how I feel about being engaged in a community where everyone you meet is dying.  It's heartbreaking and terrible.  And yet those of us who have the least time often turn out to be the most worthwhile.  They never forget the lessons of mortality and the perspective gained from facing down the doors to the other side.  They can't forget, because they live it every day.  There are moments when I find myself falling back into the life I lived before cancer, and the lessons of mortality lose their sense of urgency.  For those of us who are lucky enough to have no evidence of disease, it's necessary to be reminded that there was a time when only one thing mattered -- the struggle to live another day in the company of the ones we love.

Productivity and MTV

I knew this would happen.  I took time out of my day to watch Kaylin Andres on World of Jenks, and now all I want to do is cry and write about cancer.  The thing is, I've been following a pretty strict writing schedule lately (Can you make that claim after only two days?  Fuck you, two days could be "lately"), and getting a lot of work done toward a specific non-cancer related goal.  So today I was feeling good about jumping right back into it.  But I saw Kaylin's latest blog post and found her episode on MTV's website, and now I'm ruined.  So thank you for that, Kaylin, and you too, MTV.  But you can watch her episode here: http://www.mtv.com/shows/world_of_jenks/series.jhtml

And you can check out her blog here: http://cancerisnotfunny.blogspot.com/

She's a much cooler cancer survivor than I am.  And although I'm terribly jealous, I'll live (for now).  That's a little survivor zinger for you.

David Cancerfield

Hello there!  Kevin here.  I hope you're all doing well.  The plan for this post is to supply a little background.  I wanted to explain to you a bit about myself, do my due diligence and get the "David Copperfield kind of crap" out of the way.  A lot of you might already know who I am, but it never hurts to have a refresher.  Besides, a lot has happened in the past few years, and I hardly recognize myself these days, so I think it proper that I try to explain exactly how I got here.

I'll tell you in advance that I hate introductions, and I hate talking about my self.  Any time we had to go around the room and introduce ourselves, whether at school, work, or wherever, I always tried to make a joke out of it.  When it came to be my turn, I would dismiss the exercise by saying something humorous or outlandish.  I usually brought up a funny aspect of my life or an unusually entertaining interest.  It ended up making people laugh, or at the very least raised a few eyebrows, but it never was very informative.  Although, in my defense, you could easily make the argument that defining yourself as a vocation is much less informative than what I offered up.  A person could know a lot about me by the kind of answer I chose to give.  And I gave people direct insight into my character.  As if saying, "Hello, this is precisely who I am and what I can offer you.  If you aren't interested, I wish you well regardless."  

Or maybe that's an excuse, and I really just have issues talking about myself.  That's more likely than what I just said, isn't it?  Yes, it's true, I have trouble letting people in.  Well, unfortunately for me, in a story like mine, it helps to have some background.  In particular, we need a setting, a character history, and a plot synopsis.  That's a lot for one post, and a lot for me to divulge without breaking out into involuntary ticks, so I'll try to keep it brief.

I have lived an incredibly fortunate life.  My youth was glorious, high school was even better, and college opened my eyes to the nature of the world, and the contents of my soul.  But I will save all of that for a later post.  Because it's young adulthood that really concerns us, as it's the backdrop to this story.  And New York City, is the setting.  It's the place where I came into my own and tightened, for the first time, a lot of the nuts and bolts of my character that until then had careened around artlessly in my head.  I squared the free stones of my nature, and built a new and exciting life for myself.  One to be envious of.

Let it be known that I despise braggarts, and openly narcissistic personalities.  Bragging reveals more about one's fears and inadequacies than it does about one's achievements.  In this case though, it's necessary to talk about certain accomplishments in order to uncover the disparity between my former life and the one I find myself leading at present.  Showcasing my life pre-diagnosis will hopefully serve to paint a more comprehensive picture and candidly reveal the broader circumstances surrounding my fight.

By the age of 25, I had worked on campaigns, managed a city-wide project and 130 employees, written for a celebrity client, been invited to join a secret society, attended VIP parties, had a fight scheduled by the producer of UFC, been in a music video, played live shows at music venues, hung out with celebrities, and more.  I had been a lover, a fighter, a world traveler, a rock star, a poet.  There were pool parties, expensive liquor, bars where everyone knew my name.  And there were the greatest of adventures.  I explored my environment relentlessly, with the finest company.  I was on top of the world, in the greatest city in the world.  New York was more than an oyster, it was a playground for the soul.  And I quenched my soul deeply and often, underneath its lights and between the five hearts of its boroughs.  The blackened canopy of lustful nights became as much a home to me as the house of my youth.  There were one-night stands, power struggles, and drunken arguments with cops.  It was, in fact, the life I'd always dreamed of.

My New York friends will laugh at this.  Especially the natives.  They grew up there, and they know it all -- the culture, the accessibility, the diversity.  They laugh at the starstruck tourists, the transplants, and the bridge and tunnel club.  I admired the ones who could navigate the intricacies of a complex machine that I had only until then dreamed of.  And a handful of them seemed to be in possession of certain secrets, or answers to questions I'd obsessed over all my life.  I attached myself eagerly to these few, for good or for ill. What no one will tell you is that New York is abuse, from the minute you wake up to the minute you pass out, drunkenly, in the apartment you can barely afford.  Surviving there is its own career.  And those who choose to try are either out of their minds or, like anyone else, simply conditioned to their environment.  But all of us dream of something more, and wherever we claim citizenship, it isn't fair to say that it's the most courageous of us who act upon that dream.  It could the most curious, the most ambitious, the most cold-hearted, or the most dreadful of us.

Of course, life in New York, as with anywhere else, is sometimes very simple.  Sometimes the most important thing is finding a place to pee on the way home from the bars.  Sometimes the most important thing is finding out if the eyes across the room are for you.  I had explored those things and plenty more.

My last few months in the city were some of the best months of my life.  And I know this because I don't remember much of them.  The number in my savings account warmed my heart, and I had no responsibilities.  I had just finished managing a project at Yankee Stadium, and I was doing what I wanted -- I was writing.  My friends and I began to embark on a series of adventures that would put Odysseus's journey to shame.  I wasn't afraid of anything.  Nothing in the world could scare me after I'd conquered the most intimidating location on the planet.  And then, after a few months of living like a prince, with friends that have come to be family, it all fell apart.  At the age of 25, I was diagnosed with cancer.

I'm not writing these words so that you'll feel sorry for me.  Mine is just a story.  Other people have stories too.  In fact, we all do.  Some of these stories are very similar to mine, some of them very different.  Each of us lives through a torrent of abuse in the time we are granted.  And we are all of us tested -- and not in any divine sense -- for the right to be warriors against insurmountable odds, for the right to exist.  Everyone fights, and everyone's battle is extreme in its own right.  As members of the same family, we should strive to try and make the battle as painless as possible, with all of life's benefits and opportunities as accessible to others as they are to ourselves.  Because we're all in this together.  And if we do have any God-given rights, the most important of them is, without a doubt, that we have the right to be nice to each other.  

Metastatic Memories

I've put this off for a long, long time. In fact, I've put it off for a year and a half. I mostly discouraged myself from even considering the attempt, from the very beginning. I saw other people doing it, and I thought that although in some cases they were very successful in their undertakings, it simply didn't appeal to me. Something about it makes me squirm. It inspires me to fight to uncover any excuse in the book in order to justify my inaction.

What am I talking about? What is this terrible and ugly thing that I'm resisting with every fiber of my being? Because there are many things in life that I choose to resist. Things I refuse to take responsibility for out of fear or an inability to face the emotional and psychological consequences. As with us all, I too abandon certain nagging thoughts to the dark recesses of my mind. As with us all, I accumulate pain and guilt through a series of encounters with forces either beyond my control or not. And as with us all, I have many pervasive and lingering fears. In this case, however, I'm talking about the decision to write publicly about my experience with cancer.

Perhaps publicly isn't the right descriptor. Because, in fact, I've actually written a book about it that's currently being shopped around for publication. And there's hardly anything more public than that. I suppose what I mean, specifically, is the actual act of blogging. Blogging is a more accessible form of media. It's a series of intimate details about the blogger's own life. A projectile vomiting of unfiltered ideas that can be interpreted and analyzed with little effort. Constant postings that explain the character defects and neuroses of the author. Blogging constitutes a window into the blogger's very soul. It's a very public enterprise. I've always wanted my accessible thoughts, my public thoughts, to reflect a particular attitude or brand. I never wanted to be the cancer kid. Yet that's what I am. I wanted to be the carefree, mildly eccentric, live-life-on-his-own-terms, rock star personality that I so admire. I want to make people laugh. The last thing I want to do is make them uncomfortable. In fact, I don't even want to make myself uncomfortable (who does?), even though I've been in a constant state of discomfort, albeit unconsciously at times, since my diagnosis.

My decision to finally offer up a public record of my cancer fiasco is in fact an act of great personal courage. But I'm not asking for your admiration. Others may not find writing about their cancer to be very difficult. But they might struggle with something I find easy. That's the nature of being human. We all have our wars to wage.

And so my reluctance to blog about this has been covered by layers and layers of justification, buried deep with no hope of discovering why the resistance is present in the first place. Any time the topic is broached, I find myself saying, "Blogging? Well, shit, I wrote a book, for God's sake -- isn't that enough?" And I don't know the answer to that. Maybe it is enough. Or maybe, as a cancer survivor, I have a unique obligation to increase awareness and fight for those who can't fight for themselves. Possibly, and I plan to post more on this later.

But why the resistance to blogging? I did write a book. I wrote it while undergoing immunotherapy for stage 3 metastatic melanoma. A good bit of it, probably a third, was completed during my first month in the hospital, where I received the lion's share of treatment intravenously every weekday for four weeks. Days when I cried myself to sleep most nights, and struggled desperately to keep my sanity intact. But those images and feelings, those metastatic memories, are distant. My diagnosis, my surgeries, my treatment, all passed in a blur. And likewise, most of the actual writing did as well.

It's the paralyzing fear of revisiting these memories that keeps me from blogging. Now that I'm thinking clearly, and enough time has passed, I've gained the capacity for perspective. When something traumatic happens to you, it's very common to shut down emotionally in order to avoid the most terrifying aspects of your ordeal. And that's what I did. I functioned entirely on autopilot for a year and a half. Ostensibly, that isn't even a bad thing. In fact, I did very well. When you've severed all emotional connections to your circumstances, you can be anything you want. I was very courageous, and I'm told I was the glue that kept my family together after my diagnosis. I spouted contrived wisdom and used romantic ideals to comfort those closest to me, hardly realizing what I was doing. Some of the things I said or did are offensive to me now, due to the absurd oversimplifications I entertained or encouraged. Cancer is not romantic, and the smell of death circling above your head can never be effectively aerosol-ed. The mere suggestion that it can is offensive. And I was at one time the worst offender.

And so, after "waking up" from a year and a half of autopilot, a year and a half of embedded trauma, and a year and a half of drug-induced cognitive suppression, it's almost unbearable to look back over the events of the last year and a half without overwhelming terror. I've woken up to find myself alive, in working order, and surrounded by love and support. It's my responsibility to carve out a path from there. That in itself is terrifying -- what is life supposed to be like after cancer? How fulfilled can it really be? Do you stop taking shit from anyone, or anywhere? Do you adopt a no-shit policy? Is it okay to finally be selfish? Is it alright to ignore certain responsibilities, because you finally have your priorities straight? These questions and more are certainly worthy of extensive examination.

Personally, I suppose blogging will be an outlet. It'll allow me to finally free myself of some pervasive negativity, and maybe even relieve enough of my recently adopted neurotic behavior to once again function in the world at large. It will certainly serve to garner awareness for cancer, and that's a primary goal in my life these days. Because, as much as my experience has pained me and set me back in my own life, the thought of anyone else undergoing the same level of suffering is very hard for me to think about. I find myself tearing up every time I begin to read the account of another cancer survivor. Awareness is important, because suffering is only alleviated when there is enough manpower present to alleviate it. It isn't magic -- it's math. And all the publicity in the world won't help unless enough of us decide to act. Action manifests itself in several ways, and that's part of the reason I've finally decided to blog about this.

My account is detailed in my book, "Cancer Kid." But that isn't enough. I have certain goals I've sworn to meet, without excuse, and I plan to meet them. Blogging was not originally one of those goals, but it's going to help in several ways. It will hopefully help the public at large be more informed about the goings-on of cancer survivors. It will help me create a platform for myself and publicize my work, which will in turn increase awareness and further the fight. It will allow me the resources to fund the foundation I'd like to build. And, perhaps most importantly of all, it will free me from the fear I've buried so deep in my subconscious, and allow me to remember the important things in life.