Being Praised For Being

There has been a quote in my head as of late which has become a sort of motto for me because I cannot seem to shake it:

“We are meant to love people and use things.

But the world is in complete chaos,

Because we love things and use people.”

As I think on this quote I tend to feel that I have transcended materialism and have genuinely embraced the importance of people in my life; but that’s not fair to everyone else, is it?

Okay look here, and I will not sugarcoat this for you, my life is not an easy one! This week alone I have had two seizures, both strong enough to wipe out entire days worth of cognitive function, I have had my brain hemorrhage twice as well and had to be rushed to the ER as massive blood-clots, along with massive amounts of blood, worked their way out of my head. That is not to mention all of the rest of what goes hand-in-hand with my disease:  Slowly losing functions, watching as your body eats itself and atrophies (you think that you are unhappy when you look in the mirror?), staring out the window at all things that you used to able to do, watching your kids play and not being able to play with them (I cannot even begin to tell you how it feels to not be able to physically play with my kids outside – squirt guns, bikes, football, baseball, wrestling and just general rough housing… it is a list that has been growing exponentially with my attempts of permanence and as long as I continue to fight cancer I will continue to read my list and try my hardest to list all the reasons why I should not just give up). I realize that I can probably, but pointlessly and without purpose, do this all day; so I will just end it with an etc.… and move on.

The point that I am trying to get to – and please bear with me on this – is that it is unfair for me to expect that anyone else should live up to such a quote. Sounds weird, uh? Let me explain. In some aspects, even after my rant in the beginning, I have to admit that I have been given opportunities that you have not been given; I have received gifts that you have not received; love and acceptance are laid at my feet, and I am no longer judged on the same issues of conformity, ideology, success, finance, career goals, etc.…  My life, for better or worse, has been essentially stripped down to the bare bones. I am expected to survive, or at least to try, and that’s about it.

That pretty much pulls me out of the rat race (unless it is an experimental lab-rat race, then I am back in, bwahaahaa baby). What I am saying here is that my goals are no longer as lofty as yours and because of that I cannot sit back and judge you from my self-righteous terminally ill throne. I have been handed a single and very simplified choice, one that cuts through all of the chaotic choices that must be made by those (you) that are trying so hard for a life of betterment, accomplishment and fulfillment, and in the mix of it all, trying to do the right thing. Whereas me, I either can try or give up. I have repeatedly chosen to try and am repeatedly praised for it.

 Okay, back to my new motto:

“We are meant to love people and use things.

But the world is in complete chaos,

Because we love things and use people.”

Again, I have been given a unique opportunity to transcend such conformities in the eyes of my family, friends and most of those that are aware of my circumstance; but what about God? Is he cool with the either-or scenario that everyone else has approved of?  I am guessing that my illness did not come as a shock and that he probably expects a little more from me than everyone else that is just terrified to be me – life sucks, but at least I’m not that guy over there seizing on the floor at the mall (recognize).

In so many ways I have been given a pass on expectations. But honestly, do I deserve them? What is, or more to the point, what should be expected of me? What should I expect from myself? I am sure I can just cruise through and everyone will tell me how strong I am, how my will is mind boggling, how my strength and determination is an inspiration for all to witness; I am a hero of heart and soul.

What would you think of me if I were just muddling through the complications of a normal life?

I am a normal person that has been thrown into an abnormal hardship. It is easy to deny yourself the fruit at the top of the tree when you are unable to climb up and grab it anyway! Blind people do not drink and drive. Those that are mute tend not to have shouting matches and deaf people never blast their music at two-in-the-morning; they should not, however, be given a pass for it! Cannot and does not are not the same thing.

So my new motto, as amazing as I think it sounds, cannot be mine to use; I do not lack possessions because of some selfless, moral choices that I have let direct my life, nor have I always put my loved ones first (in fact, like so many I took them for granted). But I do get a second chance: a second chance to put my family first, a second chance to be grateful and humble, and a second chance to be a giving person.

So, here it is. My struggles, though extremely visible and hard to watch, were not a choice and they were thrust upon me and are generally obligatory in nature. Does that make me worthy of so much praise?  I don’t think that it does.

But I am trying hard to make the life corrections that I have been so graciously allowed to make and I will continue to do so as long as the option is mine to decide. I guess what I am saying is: Our circumstances, sometimes, are largely outside our control and in those moments, rise or fall; we are the people that we truly are and should not be afraid to show it. Our demons and how we battle them, not our talents or our gifts, is ultimately what defines us.

So who are you? Are you making the right choices in life? Are you happy? Do you have the new IPhone? What are you doing with your old IPhone? I am just curious… I already asked the Lord to buy me a Mercedes-Benz - you know, cause my friends all drive Porches and I must make amends - still waiting on the answer though (you can thank me later that this song is going to be in your head all day).  

I am tired, and have a tendency to wax philosophically for far too long when I am. Hoping that my point has been made I am going to wrap it up and leave you with this: Before I became ill, I bragged, boasted, exaggerated and embellished all of my accomplishments, talents and gifts. But when I became terminally ill I made a promise to myself that I would be honest – no matter what! After all, I was dying and there was no point in being dishonest with others or, and especially, myself anymore.

It has been this commitment to honesty and openness that has changed everything in my life. I have tried – granted, in my own peculiar way – to bring, not only my struggles and challenges that I am trying to overcome but my failures as well to the forefront of this blog. You are allowed to look at them, criticize them, ignore them or whatever the hell you feel like doing with them – they are yours and will be yours long after I am dead and gone.  

Shaggy Shuffle

Well it has been over a month since my last post, for reasons I will get to shortly, and I thought that I should probably write something to let everyone know what I have been doing, the current condition of my health, and then some random musings to make it all awkward.

First, my health status: my mom has been making her own updates, but I should probably put my own words to it – I have a blog after all – I have not improved! That's never fun to say! (The exclamation mark makes it a little better though). But I have been given copious amounts of new drugs for masking, dulling, painkilling and “The Red Pill” - I'm not sure what it is for though.

With that being said, I am not getting worse at an accelerated pace like we all thought; the disease has actually been very slow growing so far. The problem however, is that it does not need to be very active to do severe damage. I go to bed at night feeling pretty good and then wake-up missing a function that I had come to know, love and over the years, take for granted – like speaking clearly.

As of now though, I am feeling well; turns out that I had so much swelling in my brain that it was causing physical, cognitive and verbal issues (my wife was finally able to talk about her day – in excruciating detail – and I had to sit there and take it). But since the swelling is down, and though I still do not possess the runaway capabilities I once did, I might be able to block her punches after she reads this.

Also, I have been writing – a lot.

I wrote book one, and have been editing, narrative and voice issues mostly, but grammar and dialog as well. My wife has been reading it to my kids, the stars of the book, and they have really liked it.

I am now about 40% of the way through my second book and I am really proud of it. The first book was a huge learning experience of trial and error (originally I tried writing about my childhood, but that was disastrous). So, my first book is actually my second effort and we are in the increasingly complicated endeavor of trying to self-publish copies for family and friends before Christmas – when we get a better handle on it I will let you know in case you want to order one.

Other than the exciting news that the chemo isn't doing what I want it to, and I am sure that's the same for a lot of us, I am adjusting – what else can one do?

Sometimes it feels as though I live in the eye of the storm; the world is spinning and circling around me in a high-speed-chaotic-mess and I am just sitting here typing. Sometimes I lose a function here or there, but I adjust, I adapt, I find my bubble of solitude and watch as the chaos around me makes me dizzy. Things get set down, things get picked up; I type. Questions are asked, questions are answered; I type. I show up to doctors’ appointments, MRI's, Chemotherapy, physical therapy and family functions when possible; I type. Whenever I seem to leave my little-bubble of solitude, I feel like a kite that has been pulled into the storm and I am immediately overwhelmed.

I wonder sometimes, if I really ever moved so fast and if I had the option to again, would I?

So take for granted whatever you can now, because when you actually become aware that you no longer have it, it is a hard pill to swallow – and eventually, we are all going to have to.

Go strap on your running shoes, try something new and exciting, take some risks, take some time, don’t over analyze and last, don't be too critical of anything, ever.

Life is supposed to be enjoyed, enjoy it.

And if all that fails to motivate you, you can always laugh at my Scooby Doo and Shaggy impersonation that I do in the shower whenever the floor has been thoroughly soaped and I am about to eat it!

Until my next post!

Place me on a Shelf

Update time!!!

First, the exciting news – at least for me: I have finished the first draft of my book. That's right! I wrote a book. I am still, with the help of some very intellectual friends and family members, in the process of editing; but the actual book is done! That was definitely one thing on my “bucket list.” My bucket list, by the way, never got all that long. Because every thing happened so fast:

9-days-ago, I was trying to walk.

8-days-ago, I was trying speak.

6-days-ago, I was chasing girls and trying to fit in.

5-days-ago, I was trying to be a grown-up (actually, that's still very much ongoing).

3-days-ago, I found out that I was going to be a Father (by far the scariest and most exciting thing has that ever happened to me).

2-days-ago, they said I was sick.

Then – only yesterday, I think it was – they told me I was dying.

Until yesterday, I was still just trying to carry my bucket of responsibilities and did not have time to make a list. So, I did the next best thing I could think of; post-it-notes. And as it turns out, one of the very first of the post-it-notes (the bright green one) said, “write a Book.” Boom! Done! Yep, I did that one!

The next post-it-note (the purple one), said something about, “fixing a hole in bucket?” or “fill this whole bucket?” I am not really sure. By the time I wrote it, I was on a lot of terrible medications and also had already lost the use of my writing hand; and the note was not very legible. Live and learn... Damn, I forgot.

Well, meanwhile, back at the update (it's usually supposed to say ranch there – good stuff right there. You can use it after I buy the ranch, which is supposed to be a farm. I suck at idioms, but I'll get over it).

So, the tumor is growing, my brain is swelling and we are again, trying to find the treatment of promise.

I honestly am not sure what I want to say here, or what I should tell you? What do I want to tell you? I am not really sure what I am going to tell myself? I guess the good news is that I still have two – count'em – two different types of chemotherapy. That is, if this newest, latest and greatest one fails me. I would tell you the name of this very up-to-the-minute flavor of poison, but I don't know what it is, nor do I care to learn it!

I hate leaving anything off on such a low-note, but I have not received any positive medical news in months; my body is losing more functions every day, my mind is slipping into some hazy world of confusion and hell, and my voice and communication abilities are going. This is probably (hopefully) not the news that anyone was anticipating. Nevertheless, it is the only news I have available for you – so, take it or leave it.

I did, however, write a book. And it does have a happy ending.

So, regardless of my longevity, I can always be put me on a shelf in ash and soul – or, if you are not going to buy the book, you can just put a post-it-note where the book should go.

Snail Trail

My wife pointed out to me the other day, that maybe the hardest part of being really sick is the lack of consistency; you can never really plan for anything. And when I say anything, I mean anything. Think of something (anything), place it right (here) and know that you might or might-not be feeling up to doing it (I realize that by even saying “feeling up to it,” I am in fact planning something (anything).

Okay, back to my story: For a while everything was on the up and up. I was exercising every day, doing yard work, eating a clean diet and reaping the results of my new, healthy life style. Every once in a while I might have a seizure or two, but that just made me fun at parties. Then being sick strikes again and lets you know that you were never in charge in the first place. It's like running up the steps of the Philadelphia Museum of Art, blasting 70s anthem music that says, “even though you're a cloddy moron, this time will be different, this time you will win,” people are cheering for you, your sweat suit has holes in it and looks like it smells like ball sweat, but you don't care – not even a little, you're just running and smiling like an idiot, when you finally reach the 71^st step of the 72 step climb and boom; cancer takes you out and you roll – not slowly slide down – head over heels to the bottom and slap your face on the hard reality that you thought you could escape. You know what? It is actually just like a Rocky movie. The difference in my movie is that after all the training and build up, I just get knocked out within 10 seconds of round number uno. Cut! It’s a wrap!

The cool part about falling all the way down the 71 steps though, is that when you hit the bottom, all the people that were cheering you on while you were running up come running down to help you. I do, sometimes wish that there was a way for them to help me back-up, without actually looking at me though; nobody wants to be in the center of a crowd while they are crying about their skinned knee from falling and snot is running down their nose.

The other day I had seizure at church. When I have seizures, all my muscles flex and pull me into odd poses. I don't fall over and shake or even make sound; my body just becomes rigid and my face (the only cool part about having the seizure) becomes slightly demonic and extremely angry looking. I am telling you this in the hopes that someone at my church will explain to the poor guy that was sitting behind me that I was not, in fact, trying to eat his soul.

All right, that taken care of. I have not written in a while, or I have not written on my blog in a while; I wanted to give you all a much needed break – plus, I have been devoting all of my time to writing a book. Books take forever, by the way.

So, the update: I have brain cancer, but you probably already know that though. I am two months into my year of double chemo and I am doing fairly well with it. It most definitely is not the greatest thing I have done, by any means, but it is also not the worst thing I have had to do either.

Other than that, things are just busy – like always. Doctors’ appointments every other week (that honestly, instead of making the drive down and wait in the lobby, could be summarized in a simple 2 minute phone call that says, “Sorry David”), I get blood-work and labs every week, chemotherapy infusions every other week and by mouth every four weeks, and I finish that off with being very sleepy and napping a lot. At least mosquitoes don't bite me anymore.

This brings me back to my original point; I can't plan for something (anything) with any type of certainty. Anything (something) that I plan runs the risk of not fitting into the slots that my schedule permits or the unknown time frame that permits my schedule. So, I am busy and franticly trying to accomplish what I can, something (anything), before I can't accomplish anything (something). A snail on a pole; 12 inches up, 6 inches down – until I dry up and permanently suction to the spot where I could go no further – still looking up at my own snail trail and attempting to re-climb it.  

Thanks

I realized this morning that it was probably time for an update: I have completed my first month (two cycles of Avastin and one round of Temodar) of chemotherapy and it was not as bad as I remembered it to be. Maybe I am physically healthier (other than my cancerous noggin, of course) then I was the first time around or because I know what to expect this time – either way, I am okay.

It is always an odd thing for me to write about myself because I usually have no idea what I am going to say, or more to the root of the issue (probably because I'm a dude) until I write it down I normally have no idea how I am actually feeling about myself or my situation. That is one of the reasons why I started writing in the first place. But that is not the case this morning. This morning I know exactly how I feel and have something to say: Thank You.

If I am going to be absolutely honest then I have to admit that having a terminal illness causes selfishness, or at the very least, self-centeredness – though internal reflection is a necessary part of the process and I am by no means faulting myself for doing it since it is how we find or even generate the strength to push-on and move forward; it solidifies the reasons for our will to do so, and in the end it is how we will find a sense of peace and closure. But nevertheless, it is an inward focus, and by its very nature tends to distort your peripheral vision of the outside world and your connection to it. I am saying that our decisions, even (and possibly especially) the ones that are internally focused are not made in a vacuum, harbor consequence and that there is no such thing as ceteris paribus.

Which brings me to my point: I am eternally thankful to those that have sacrificed so much for me. I am writing this post (and completely murdering a book as well), on a brand new laptop that my brother gave to me (the bar has been set people). And still yet, I am writing while my wife is cleaning the entire house around me, and while in the relative comfort and security, both financial and emotional, provided by my family and friends that have all stood up to support me - a guy who is largely focused on himself.

I have been keeping up with the world news of late (being unemployed affords me that option, though I do not recommend it for anybody that does not want to be angry with the world or hate humanity in general), but it does offer the benefit of recognizing one's blessings and good fortunes. I will – and I am absolutely positive about this – continue to complain, be bitter, feel hornswoggled (that's a real word, somewhere, at some point in time people must have actually used it), battle with jealousy and depression, and all of the other “poor me” thoughts that plague every human, regardless the severity of their problems. But I will do it from the comfort of my home (a mile and half away from the beach), with a full belly, on my new laptop, while receiving cutting edge medical care and surrounded by family and friends that go out of their way to make sure that I am as taken care of as humanly possible. So again: Thank you.

My new year

I have not posted anything for over a week, because saying “this sucks” sounds more like a tweet than a blog. My year of intense chemotherapy started yesterday and, until now, I have not been able to grasp exactly how I feel about the situation.

But, for the sake of emotional honesty and accurate documentation, here I go anyway.

In economics there is this term: Delayed Gratification – the ability to forgo immediate rewards in the pursuit of a larger, more substantial, and therefore, a more gratifying payoff or return of investment (e.g. time, education, finance, etc...). It is a term that has become synonymous with my life. The mantra helped me push forward through some fairly dismal situations, both financial and emotional, while in pursuit of bettering the lives of my family and myself; sacrifice now for the sake of a better future.

It is still not a bad mantra – if it works out the way you planned. The problem, however, is that if it does not work out, you have sacrificed all that is dear to you in the hopes of eventually making good on promises. It is the promises, as a man and a supposed provider, that plague my psyche the most.

That being said, there is a discovered silver-lining, as there always must be, in the dismal situation that I find myself in. And here it is – I have no choice!

That might sound like a weird thing to say at a moment where I have lost all control over my situation, but it is the truth. I have been stripped of all decision making abilities; all of the confusing, consequence bearing, emotionally challenging, guilt ridden second guessing copious amounts of crap that was on my plate have now been removed from me and have been replaced with a singular disgusting Fear Factor type of challenge – eat it, or you are off the show.

So it has become a fight or flight scenario. Some of you might be thinking “Hell yeah. Montage time. It's the eye of the tiger...the thrill of the fight.” You might even be able to see me doing one arm push-ups. I have to tell you though that even though I love your enthusiasm you are probably going to have to dial it down a notch to something more like What About Bob, when he was strapped onto the mast of the sailing boat screaming, “I am doing it! I am a sailor now! I sail! With the wind and the wind and the wind in stuff!” Or maybe, we should slide a little further down the pole to when Slaw from the Goonies was so excited that Chunk gave him a Baby-Ruth (which has been on my mind this entire morning and I am going to try to convince Angela, when she wakes up, that Baby-Ruth’s are actually a balanced part of a cancer diet when consumed in moderation with whatever kelp, kale, and tree-bark smoothie I will be drinking for breakfast).

I was hoping that while I was writing this post, I would happen to come across some obvious or previously overlooked insight that I could share with all of you that have written to me and are going through similar situations; vicariously and/or first hand. However, the only information I have for you, is my current condition and what I am doing in my efforts to stay positive and as productive as I can be.

My right-arm is completely obsolete from shoulder to fingers; which means that every time someone calls me, I immediately develop an itch on my nose that I cannot scratch. My right-leg is functional to hobble on, like a peg-leg, when I am wearing my brace. Therefore, and thank god, I am still mobile enough to claim some independence. I am continually attempting to adapt and learn new tricks in order to remain as functional as I can, until that point in which I cannot. For example; I have learned that spastic spinning in an effort to not to fall on my face can generate a sufficient amount of force for me to slap myself in the face with my stupid hand – I will be experimenting to see if this maneuver can somehow be used to slap the itch off of my nose while speaking to long winded bill collectors. Also, I should probably say that I have now been on a plant-based diet for about two weeks now. It has not been as hard as I had suspected it would be and it seems to be making the transition back on to chemotherapy and gut destroying steroids a little easier; but it is way too early to give any concrete feedback – I will make a note if it proves to be effective or even pertinent in anyway.

I guess that the takeaway from this update is simply this: I really, really want a Baby-Ruth and I am prepared to fight for it; because I am a fighter... Wait, that was probably it.

Cancer Update 5

Cancer Update 5

My goal is to write this in one pass. Because honestly, I do not believe that I possess the testicular fortitude needed in order to reread, rewrite or reexplain the predicament which I now find myself in.

In the face of what I am about to confess here it might need to be said that this not a letter of resignation on my life or acknowledgment of upcoming failure – it is not in my nature to give up. It is, however, an open and honest assessment of my current condition, my options, and my future.

First, it should be noted that I have been pulled from the Tocagen trial (a procedure that injects a virus into the cancerous tissue of the brain, that can be then targeted by its unique DNA) because the tumor has become too aggressive to not take immediate action against it. This was the least evasive of my options, and my best hope for me to work back towards a normalcy that I can hardly remember.

Okay, so here is the gist of it. I have now exhausted all of the currently available medical options geared for curing me and am now committing to the maximum dose of chemotherapy and Avastin (a bi-weekly blood infusion treatment system) for at least one full year, in an attempt to only inhibit or slow the tumor growth and accompanying brain damage. The hope is that another treatment will become available sometime during this year, or I guess at the very least, buy us the needed time to rationalize the agonizingly inevitable decision of balancing quantity of life against quality. As difficult as it is for me to fathom, this is where it actually becomes hard. There is no more planning for a future of normalcy, there is only my desperate grip to hold on to the liquid normal that is rapidly pouring through my fingers.

My options at the end of this year will be a weight against time and ability; is being crippled worth five years? Is brain damage worth six months? When does it become too hard to watch and who makes that decision in the end? Is it me that lets go for their sake? Is it a question of... of what? I do not want to decide! I don't know how!

What the hell am I supposed to base this on? How long do you watch a dog suffer before you put it to sleep? Do I do everything that I possibly can, no matter what the cost is to my family’s emotional sanity? My family will be able to take exactly as much as they can and no more. And what is that? I will have to ultimately decide how much that is and I am positive that it has already been too much for them. They deserve better than this.

The reality is, that at the end of this year I will weigh the consequences of brain damage from radiation vs. brain damage from surgery. I know – decisions, decisions, decisions.

I have always been a private person. I have worked diligently to keep my thoughts and actions to myself, and have attempted to keep things light and avoid judgment of any kind; negative or positive. I was talked into doing this blog as a coping technique to deal with the feelings that I am, by nature, compelled to hide; to address what is impossible for me to verbally express; to give my sons a solid understanding of the man I was, the man that they will know from memory alone. And up until this point, I have neglected the most important and most painful part of this undertaking; addressing you two directly.

I do not know how old you will be when you finally read any of these posts. Or, what you will ultimately think about them and me in comparison to the man you thought me to be. I don't know if you will resent my decisions or be angry at me for not allowing you the full knowledge of the circumstances; which is to say, and I hate this so much, is now your circumstances. It is a difficult thing to contemplate your right as my child to know and your right as a child, to just be a child. As a parent, it is supposed to be my job to shelter you from hardship, which I cannot, since I am the hardship. Your lives are not going to be as typical as your friends, but please do not become hardened. Wounds, especially deep ones, have a tendency to scar and callous. As I think about both of you; your innocence and unabashed kindness, my biggest fear is that you will become jaded to your own exceptionalism by such a harsh childhood, and will not embrace the beauty of this world.

You two are only boys right now, but when I look at you both, I can already see the men you are going to be. I want to give you advice, wisdom, words to live by... but what they are, I am not sure. I would tell you to be good, but you are both great; I would tell you to be strong, but you have proved already that that would be an unnecessary statement; I would tell you to make me proud, but I am already proud and it would be impossible for you to do anything that changes that fact.

Just know, that whatever confusing pain you were forced to watch me go through, it was so worth it; there is nothing in this world that could ever hurt anywhere near enough to block out the amazing moments you gave to me by just being next to you both. That's enough for now I think. So, Ethan and Caden, if you are old enough to read this- go get a job and stop giving your mom a hard time. I love you both.  

Incongruent Rationalizations

I usually try to type in the morning before I do anything else. It is not from a love or dedication to my writing. Nor is it because I am a morning person that is eager to fill the world with my inner sunshine and have developed a routine that allows me to more freely tap my creativity in order to do so: No, I write in the morning because it is the only time to write without being bitter or angry. I have to write before I spend forty-five minutes trying to floss my teeth with an arm that will not listen to me, before I repeatedly fall or stub my toes on door jams, bed posts, table legs, rugs and sometimes, nothing at all. I have to write before I become too frustrated by trying to type with only the use of my poky left hand that can never catch up to my thoughts fast enough to make my sentences coherent and before I become too frustrated by the day to actually care. Before I become so overwhelmed and angry at my own incompetence that I physically lash out and try to punch a wall with my stupid arm that doesn’t work or kick the wall with my stupid leg that doesn’t work and before I eventually give up, slide down the wall and weep, from the pent up frustrations of not actually being able to hit or kick the wall. I am a bottle that has been shook up and forgotten about and I just want the ability to explode one more time. I want to be violent, I want to be savage, I want to chew the face off of a living creature.

I am not so zen or mature as people like to boast. I am not accepting or well adjusted. I am not handling this well; I am just ineffectually angry. I want to swallow my tongue and drown in the blood, bite through my arm, take an ax to my leg. I want to torture my stupid non-responding fingers because they deserve it. I want my leg to scream out in pain, because it has abandoned me. My violence should be a choice. My temperament should be by decision. I just want to walk with purpose and direction the way a man should be able to walk. I want to be a protector and provider. I want to frighten my children by throwing them into the air and show them how strong I am by catching them easily as they fall. I want to blow their minds with my physical capabilities and give them something sturdy to lean against when they are afraid. No child should have to hear the phrases “be careful around your dad! Pay attention, you are going to hurt your dad! Don't trip your dad! Your dad is too weak right now!” As a child, I was safe when my father said I was safe.

I am plagued by dreams of people hurting my family as I watch helpless. I have nightmares of my kids seconds away from a tragedy that any man of limited physical abilities could prevent, but that I cannot. My physical inabilities put every-damn-thing on my wife. I am old and ineffectual years before my time. I should be put in a home and forgotten about for the sake of my family. They should be able to move beyond my limiting scope and function. I am the reason for imbalance and the emotional issues of my children. I am holding my family underwater and drowning my own children as I claw up their tiny bodies in my feeble, selfish and unjustifiable attempt for air – I am supposed to be their foundation, not their burden. But here I am, the bricks chained to their helpless little ankles. I am not the safety net that a father is supposed to be, I am instead, a net of imprisonment that has been cast out over the waters of their youth; an entanglement of confusion and fear, of weight and obstacle, a lesson of life and death that I have not even had to go through myself yet.

How do I protect them from me? How do I make this ordeal appear to be okay, acceptable or fair? Is it fair? All of the rationalizing that I have ever done ( and I have done so extensively) argues in favor of randomness. If it is random, is it therefore just dumb luck? And do I want my kids to feel that their lives, true or not, are hinged so solidly upon uncontrollable circumstances? Do I tell them that, maybe it is fate or destiny? Suffering by fate seems slightly more frightening and maybe even more morbid then the Russian roulette style of suffer by dumb luck scenario.

I was recently baptized and both of my sons then, to my shock, followed suit. I am aware that perhaps more cliché then “like a moth to the flame” is “like a dying man to religion.” I am not ashamed of being a cliché, acknowledging my faith or confessing my love for God and I harbor no regrets other than timing. I wanted to approach God on my terms; as a self-created success story and to offer to the world and God himself, my selfless services for the greater good; a generous gift of my hard won fortunes to be appreciated and admired by those that were going to receive it. I wanted to choose to follow God simply because I chose to follow God and not because I was seeking favors, support, help or even salvation; that is for the weak and I am not supposed to be weak.

I have had to learn, as selfish and jerky as it sounds ( because of how selfish and jerky as I am) how to appreciate your prayers and your good thoughts on my behalf. I do not want your pity, I never have – I wanted your envy and still want it now. I wanted all of you to be jealous of my accomplishments, and not to be a recipient of your selfless generosity for my misfortunes. A generosity that I now so rely upon.

I gave myself over to God and begged forgiveness for my soul, not for my health. I wanted my children to feel comforted by my after life, not disillusioned by miracles; they are called miracles because they are miraculous and unexplainable, not because my dedicated doctors gave up all of their 20s going to school and educating themselves for me and the other unfortunates like me. It is not a miracle that I have made countless sacrifices, subject myself to extremely painful and never ending procedures, endured countless hours of frustration due to paralysis, head-aches, confusion, debilitating vertigo and utter exhaustion. It is not a miracle that my wife and I have had to endure one failure after another. Nothing that has happened is a miracle and I am not asking for a miracle either.

People die. Even the most devout of us will die. And sometimes, people die because they believe in God. We should never base our faith on the health of our own flesh, because as our flesh will surly rot so will our faith rot along with it. Praying for God to somehow prove himself to you spiritually by healing me physically will only build false hope, but a definite disappointment as well.

I am not your miracle. I am not your proof. Please do not confuse my children and set them up on a path that will surly lead to a crises of faith. Do not tell them that God will heal me, because I might not become healed and that has nothing to do with God.

When all is said and done, there is a severe chance that my boys will have suffered so unfairly, unjustly and so extraordinarily that any type of spirituality might be cause for feelings of anger, isolation or abandonment. They do not need their faiths crushed by the foolish talking of miracles. They need to know that I am not my failing body, that I am stronger than my physiology, that I am still here and that they were never abandoned. They need to know that energy is forever and that a part of me will always be with them. They need to know, as all children that are unfairly introduced to death do, that life itself is beautiful, worthwhile and forever. They need to know to not tie their spirituality to their temporal observations.

I need them to see me as more than just the crippled, emaciated dying man that will occupy their most recent and recallable memories. I need them to understand that my physical well-being was not tied to any sins or faults of theirs or mine.

I need them to understand and be comfortable in the fact that there was never going to be any miracles from God. And therefore know and be confident in that it was never God that failed me, but only my flesh.

Blogging Less

Lately, I have been neglecting my blog in favor of a book that I am attempting to write in between social obligations, chores and you know, the ol’cancer thing. You probably have not noticed, or have in fact noticed, and are enjoying the much-needed break from blog obligation and are in the process of letting your mind return comfortably to its natural guilt free state. The book I am writing, by the way, is going to address the current political and health issues that are plaguing our modern society; how to grow our consumer driven economy in a sustainable and environmentally safe manner, immigration reform policies, corporate farming issues, soil bleaching, genetically modified foods, the gun control conundrum, big oil, pesticides, hair loss, starvation, obesity, poverty, corporate welfare, social welfare, social security, pollution and global warming will all be discussed in a no-holds-bar format – I will even be including recipes and exercise tips. Cannibalism: the complete “how to” guide of hunting down, killing, preparing and eating our elders for a better tomorrow, by D.S. Randel, will hopefully be on the shelves by 2015.

In all seriousness, I really am writing a book. It is just a collection of stories about my childhood and growing up in a large, not-so-well-to-do family of mischievous boys. I am calling it The Troublesomes, which is a name that I pirated from my sister, who, unless she can come up with a way to be a lot more exciting and interesting a decade ago, will not have a very large part in my book. (Pick it up Tami). I can tell you, however, that my condition is worsening every day and making it near impossible for me to focus on more than a couple of tasks a day. I unwillingly have to rest more now than anything else and I hate it. This includes writing, as it is becoming increasingly difficult to control my right hand for long periods of time and the simple act of the necessary concentration rapidly drains me.

For these reasons, I will be posting less and focusing what I can towards producing my bucket book. I will however, be posting medical updates of significance whenever I can. They will, most likely, be shorter and more to the point, which might have actually suited you fine in the first place.

My next post will include the date of my surgery and then I am pretty sure that this blog will eventually wrap up with a “Flowers for Algernon” type of fizzle.

David out.

Cancer Update 4

Cancer Update 4

Cancer Update 4, possibly the most awesomess and definitely the most newestess update yet, brings us back full circle. I am once again having brain surgery, but this time there is the added excitement and very possible possibility, though extremely unlikely, that I will become one of those zombies from the walking dead (paraphrasing doctor here). I would prefer to mutate into a superhero or vampire or at the very least something a little less moldy, limpy and slimy – I just don’t want my face to have any open wounds that ooze cottage cheese and French fries.

Here’s the deal, I am the proud owner of a defused tumor (it is not a solid tumor, but rather it has a kind of chaotic web or net shape), which has become active again. Because it is defused and in a highly sensitive/complicated area of my brain that controls the motor functions of the right side of my body (along with numerous other functions) it is too risky for another resection type of surgery (it would be nearly impossible to not remove brain matter along with the cancer). This obviously limits the treatments that are available to me. There is however, the option of doing chemotherapy again. The problem is that the blood-brain-barrier limits the types of chemo that I can be on and most of the available treatments work best in conjunction with radiation, of which I have already received the life-time maximum dose allowed.

Solution? Apparently a virus.

I have been selected to be part of a trial that involves injecting a virus, which carries its own unique DNA, into all of the individual cancer strands in my noggin. The hope is that the virus will bond with and, therefore, mutate the cancer, allowing doses of an anti-viral treatment to target the infected cancer. The nine patients that have preceded me in this trial (at UCSD), have all been manually injected with the virus at the point of resection. I will be the first to undergo the treatment using a combination of cameras and robots while inside an MRI machine.

They are going to drill a quarter size hole into my skull and use a small catheter to pump the virus into the infected areas via the MRI images. The surgery will last about nine hours and there is a possibility that all that radiation from the MRI will give me cancer (lets hope not). There is also the slim chance that the virus can mutate and spread, causing, I assume, really awesome side effects. Granted, I only have Hollywood movies to base this on, but insofar as I can tell, all of the movies depicting cancer have been 100% accurate. Which is really amazing when you realize that I am only about 40% accurate. I’m working on it though.

One more cool thing about this and then I will leave you alone – promise. On top of having another extremely sexy head scar, the quarter size hole in my skull will be left alone for skin and scar tissue to fill in. I have not had a cool soft spot like this on my head since I was a baby. I have to say here, that I remember that when I was a toddler and still had that extremely sought after soft spot on my noggin, that women could not keep their hands off of me: They kissed me, squished my head into their boobs and seemed to take my pants off every chance they got. I am 90% sure that there is a correlation here and I feel that I need to be proactive in this situation: I am married. No matter how irresistible you find men with squishy bald spots on their heads, you must keep your hands to yourself. Now, I realize that this will become increasingly hard for most women when I teach myself a couple of alluring and sexually stimulating bar tricks. For example: “Ta-Da, Where did your quarter go?” Or maybe I will be able to plug my nose, blow really really hard and make bubbles. The possibilities are endless. Take care all.

I wonder if the next time I fall out of the shower and smack my head on the toilet, if it will suction cup? I will let you know.

Cancer Update 3

Cancer update 3

Hi and welcome to the third installment of the third most popular way to find out about my health status. That is correct; this is the critically acclaimed and highly anticipated segment of this blog: Cancer Update.  If you have not read this segment before, you are missing out and are in for an amazing treat. This segment is the intellectual equivalent of breast-feeding your mind, and it should be your primary source of nutritional information, but only if you would like your mind to grow-up big and strong with actual facts. Otherwise you can always get your information from the two leading outlets: My mom and my wife. Be forewarned though, that yes, all their information might be derived from actual facts, and yes, from obsessively studying all the available information that they can get their hands on, and okay yes, they actually listen to the doctors when they’re speaking to us instead of making jokes and using all the time the doctors are speaking to formulate convincing arguments as to why they do not need seizure medications and that they should be given a prescription for one of those cool robot legs that would allow them to run like the wind, look like a rad super hero or at the very least, be able to kick small kids and squirrelly animals that always scurry in their way and trip them. But, can either of them give you the status of my condition in a way that leaves you with feelings of indifference and slight amusement? I have talked to them both in great length of my condition and I can tell you from experience that no, they cannot – they are both complete bummers and should be avoided as a source of news about my health. That is unless you wanted to be bummed-out, of course.

The Update: I am increasingly losing more function and sense of my right side due to an indeterminate mass that is growing in my noggin. The panel of neuro oncologists are split 50/50 on whether the growth is due to a mutation of the tumor that is beginning to branch out and spread or if the mass is actually delayed narcosis from the radiation treatments. If you are thinking that this scenario does not sound that different from the last Cancer Update… Well, that is kinda how it goes – get used to it.

The takeaway? No matter how eloquently or passionately I argue my case, they will most likely keep denying me that cool robot leg that I want and I will have to drag this crappy semi-detached Franken-foot for the rest of my life. Cheers.

Post Script.

My mom read my latest blog (this one) and has informed me that (1) Nobody cares about the stupid robot leg thing and (2) the description of my current condition was lacking. I needed to include that there is a panel of specialists meeting this Friday to discuss the appropriate action to take.

And the choices are: Have a virus coded with its very own deoxyribonucleic acid implanted in my brain tumor via a large needle inserted through my skull. I would then take a kind of antiviral-chemotherapy that would hopefully target the tumor and leave the rest of me alone. It is experimental and I would only be the 7^th person on the study at the Moore’s Cancer Center.

-Or-

Go back on Temodar (chemotherapy) for brain tumors. Which is the rat poison that I was on last year. 

-Or-

Start Avastin: A type of chemotherapy that is pumped through a permanent stint in your chest and does something or other and probably sucks as well.

Cheers.

Medicated Meditations

Welcome to the first installment (and hopefully last) of:

The Medicated Meditations of an Insomniac

A contemplative essay by a man that had his TV watching couch hijacked - by sleeping children that complained that their upstairs room was too hot - and was consequently forced to play on his computer while high on medication (if it was medical marijuana, I could have gotten a snack and just went to bed).

And now, without further ado: A stroll through the mind of the obviously inept and apparently insane.

Every thing has a beginning, including time and therefore reality as well. In thinking about time as entity that was born of nothing, it becomes necessary to decipher the concept of nothing. But, attempting to objectify nothing results in nonsense because nothing is, by nature, a nonentity and therefore, cannot actually be conceptualized without running into a circular argument that utilizes only what is known and tangible in an attempt to prove the unknown and intangible. Nothing precedes time and therefore, time was born of nothing which never existed in the first place.

The circular arguments of time continually disprove any logical conclusions of reality, in that in order to grasp one, a solid comprehension of the other is absolutely necessary. Both time and reality, spiritual and temporal, seem to be just on the periphery of logic and reason and are therefore, both of them, unable to be considered directly, but float close enough to lure you into their contemplation. Metaphors and similes are used in excess to support our “whys” and “hows,” but only help to further the confusion by allowing the development of false blocks of logic, built from rational attempts at classification and meaning in an effort to support our systems of belief and purpose. Therefore, our attempts at rationalizing have led us down fictitious roads that feel validated only by comparing what we cannot completely form against our familiarity with the abstract and simplified norms that are ultimately just miniscule variables of the same complex unattainable issues that have been broken down to a scope and measure that is both more easily questionable and as a result, more easily answerable. But ultimately, it is always only a metaphor that attempts to analyze a single and artificial part, ceteris paribus, lacking the depth, relevance and direct relationship, correlation or link to the actual questions of time, reality, life and purpose to be of actual use. And is therefore, again, a circular argument that is as misleading, as it is inaccurate and artificial.

This all results in comforting analogies that allows existence to continue without creating, not only mental, but societal fractures of reasoning for the sole purpose of keeping sane amongst the chaos for decisive maneuvering through the unfathomable complexity of actuality. Board games, sports, rollercoasters, consequences and wars, are all amongst the available and massive grab bag of helpful, guiding and consoling clichés that are used as band-aids to bridge together the impossible logical gaps caused by the impassable scale and intricacy of a question too large and unstable for us to answer in a snap-shot, let alone in our perceived “real time.” Insofar as any direct attempt at analyzing the circular argument of time and reality ultimately leads to a narrowed focus, however brilliant, that will splinter, morph and eventually crumble when removed from the airtight vacuum seal model it has been created in and is forced to struggle in an attempt to hold form and relevance, while simultaneously stretching thinner as it is continually manipulated with incredible effort and imagination to fill in the impossible shapes and phenomenon of not only the natural world and its connective bridges over to the yet larger, and some how even more complex, world of the metaphysical realm that completely defies any human design and its capabilities, and lays out of reach of any known form of mathematical measurement available to be understood by mankind. And therefore, the sciences must be replaced with the arcane arts of philosophy and our faulty rationalizations.  

That’s it…that’s what I got.

We hope that you have enjoyed your time here at the magical and magnificent Stupidlandia™; where your dreams and coherent thoughts come to die while waiting for the children to wake up and give me my couch back…where I am sure I can fall asleep watching infomercials for P90x and finally restore balance to the world.

Incongruently-ness

About two months ago, I was told that my condition is permanent. I was in the middle of excitedly explaining my future plans and boasting that even while going through all of the invasive, tedious and sometimes painful treatments and while dealing with the massive pile of crap that goes along with having any type of serious illness (notably for me was the vomiting, headaches, paralysis, etc…), I managed to obtain a graduate certificate in management accounting and was ¾ of the way to an MBA. My plan was to beat brain cancer, while simultaneously finishing my master’s degree, landing a real estate or property management account/finance position, working my way to prominence and then writing a book about how amazing the human spirit is (of course I would have to graciously use myself as the example). To which my doctors - after looking back and forth at each other for a few seconds - informed me that even if the tumor shrinks to a microscopic level, it will never be gone and that since I have one tumor, there are multiples of others that have just not announced themselves as of yet and therefore, I cannot ever actually consider myself in remission or legally tell an employer that I am.

This was news to me. From the moment I woke from surgery and could form a coherent thought, I have been working diligently on my health and education with the necessary aspiration of changing career paths to something more suitable for my new physical limitations and therefore, still be able to support my family and give my kids the life that I know they deserve. I know what you are thinking, suck it up wuss, nothing is ever carved in stone…except death…death is probably carved in stone. But you’re not dead…so suck it up and walk it off. I have been telling myself that exact same thing. I just need to come up with a new new plan. It’s totally cool, I have been creating new career plans every since my wife, waved that magical plastic wand (that smelled like urine) in my face and yelled Avada Kedavra (yes, we both read Harry Potter before we even had kids – because we are super cool), effectively killing my life’s ambition of having absolutely no ambition (just like Charlie Sheen, I was “winning”).

So, in the face of this new dilemma that the doctors delivered to me with all the critical detachment of an alcoholic father explaining why you are worthless and will never amount to anything, the kindly doctors have informed me of the new overwhelming obstacle that I have appropriately named Are You F-ing Kidding Me? Like Wiley Coyote, it is once again back to the drawing board. And lucky for you I have decided to share my amazing, I don’t want to say genius (but, I kinda want you to say it), talents of career (re)planning in the face of overwhelming obstacles and the repeated failures of reality to conform to or even comprehend my meticulously, yet simply, planned future of greatness and accomplishment (like that stupid Road Runner, reality appears to be an easily manipulated and beatable moron – but it can unfairly run through hte caves painted on the side of a cliff).

Anyway, brilliant career planning always starts with simply free writing about your strengths, weaknesses, likes, dislikes, abilities, disabilities, and of course, relevant experience. With this technique, it is easier to arrive at a more specified target as the writing continually cancels out meaningless unimportant routes and narrows to a point; like trimming the blurry branches of an idea to create a razor sharp and crystal clear conclusion on which to impale yourself on later.

Possibly the most significant strength that I possess, is the ability to perfectly plan and navigate life. Unfortunately though, I can only do it in hindsight, ceteris paribus and without the Road Runner of reality hitting me with trains from nowhere or dropping safes on my head. I am also proficient at finding Easter eggs a year after they have been hidden and I possess the ability, and testicular fortitude, to eat the contents of the year old egg without becoming overly sick (most of the time). I can usually generate the phenomenon of finding things in the last place I look in the first place I look, with an accuracy of about 90%. In direct relation, I can give statistical percentages 91% of the time with an 85% accuracy, at least 72% of the time. This is actually something that I can do even if I am 100% unsure of the topic being considered (I guess I can work for Fox News).

Also, I can make it all the way to the end of Rudy and not weep like a baby, but Cool Running's gets me every time (they carry the sled over the finish line people). I can lie convincingly, my children still believe in Santa Claus and I have an amazing singing voice. My children might be lying to me to get more presents though and my voice only sounds good in the shower when no one is listening (and that’s if there is enough hot water left after I get done with the washing and my practiced and perfected American Beauty shower scene). Oh, and last but not least, I can point out the flaws in every movie while others are intently watching it.

An unfortunate weakness of mine though, is the inability to commit to the last couple of paragraphs of any blog that begins to bore me and more often than not, I will switch directions before actually providing any congruent conclusion. But never fear, while writing these last couple of paragraphs and watching the Road Runner (the Coyote is a genius, why can’t he kill that idiot bird?), I have come up with a few suitable career paths and am going to jump right in.

1. Become a Busker – I do not have any notable street performing talents like playing the spoons, guessing people’s weight, drawing, miming or playing an instrument.  But, I do know how to get drunk, pee on myself, limp around, handle a pan and look absolutely crazy…it could work.
2. Sell Avon or Tupperware – My mom did this, but I am pretty sure that she only made an accumulation of Avon and Tupperware, not money.
3. Host a bake sale - If this is anything like selling candy bars for Little League, I will end up eating all of the profit and my mom will have to foot the bill.
4. Write commercials – This could work!!!

Domestic Beer Commercial

Two men (of appropriately different races) walk in to their apartment joking and playing around like an ambiguously interracial gay couple from an 80’s style sitcom. They playfully head to the fridge for a beer in attempt to fain manliness (in true life we all are aware that they would be grabbing a Mike’s Hard Lemonade or each other).

Oh no! There are only two beers left in the fridge – A domestic something and a green import of… who cares (in true life it would taste better – but this is an awesome American made commercial).

The one with the domestic brand takes a swig and immediately his pupils dilate. The camera zooms in through his dilated pupil and into his thoughts:

• Classic footage of baseball clips – Teenagers in Levis playing guitars in the back of a Ford pick-up truck on the beach – Surfer coming out of the barrel of a wave – Pamela Anderson smiling and running in slow motion towards you on the beach.

The camera zooms back out of his thoughts just in time to change directions and zoom into the pupil of the guy who just started drinking the imported green bottle:

• German soldiers marching in high step– the Zeppelin exploding – Augustus Gloop being sucked up the fountain and ruining all of the delicious Oompa Loompa chocolate – David Hasselhoff smiling and running in slow motion towards you on the beach (disgusting).

The camera zooms back out of his eye and refocuses on me just standing there wondering, as I am sure that you have got to be wondering, what the hell I am actually writing about and where this post is going. I am not really sure, but I think that this is what I got from it: When a woman hands you a stick that she peed on, wash your hands before you go out to dinner and don’t set it on the counter where you prepare food either, I have an enormous amount of pointless school debt on top of my ever-accumulating medical debt, Wiley Coyote and I both suck at planning and I like to write f-ing, because I must think that by only implying the word and forcing you to say it, it is somehow different than just manning up and actually saying it.

This post is really not my best and in fact, is pretty stupid. But I am still unsure what I am supposed to concentrate on at this point. Further education seems pointless. I cannot drive, walk, pick things up, concentrate for too long (even reading books or writing lame blogs causes seizures), rooms that involve motion of other beings (or inanimate things of complicated angles) makes me dizzy and even my ridiculous good looks are beginning to fade. Oh well. Time to go plan something ingenious and wait for the next piano to fall on my head.