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.