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.