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.