Thursday, November 22, 2012, let us give thanks (another longish one)

As I have tried to chronicle the past few weeks whenever I get a chance, my moments of lucidity, focus and plain old motivation seem to be fewer and fewer. I could throw out dozens of speculations as to why, but, most of those end up with fairly dark conclusions. It seems the only way I can sense of what's up go those "dark places" I don't want to think about. Unfortunately, however, putting off "those thoughts" only works for so long. I am probably past the point of stalling and have moved well into the stage of denial and/or procrastinating. With the situation I am facing, procrastination is not really something I can afford to do. A few months ago I was able to pretend I was able to get myself physically strong enough to go back to work. I took time off to put my affairs in order, write some, in short, do all the things I would not want as loose ends to come back and haunt my conscience.

In a way, legacy lies at the heart of this struggle. We knew this beast was a killer. There was no denying that. Any cursory research of DSRCT showed that, once your disease progresses past a localized stage (maybe stage 1) and no METS were fond elsewhere people were essentially put into the pool of "how long until I die?" Now, I have a ridiculous amount of faith and optimism, so much so that I used it as a proverbial shield. Indeed, I stood on the verses from Ephesians. Putting that "churchese" into regular English, I opted to respond to any situation where fear and doubt plagued me with the belief, as outlined by the "armor" where we are told,
In addition to all of these, hold up the shield of faith to stop the fiery arrows of the devil. (Eph 6:17) Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God. (Eph 6:18) Pray in the Spirit at all times and on every occasion. Stay alert and be persistent in your prayers for all believers everywhere.
The shield of faith, as outlined in this verse, is a way to find protection from attack. In my case, I am barely hanging on. The action of the shield, to protect, is what I need, and, it is hard to see my protection these days. The regularity with which my hospital stays are increasing has increased. The complications of each stay also seems to be bumping up. Staff is indifferent, things are dropped, we have to really ride staff for basic support and service, but, this is the only way we can get responses we need. It's hard enough knowing that every time I go in something could come up that may make it my last stay. But, when you complicate it with the fact that I really am struggling with the question of work and how I am going to make this work I have begun to get really scared.

Although I know short term disability takes cares of me through a point in time, I recognize that things will change and it's not far off if it hasn't already kicked into effect. In short, I will be making less than I was before and there is little I can do about it. I look ahead and really have no idea how or what we will do. We have money in savings, but, it is not a huge amount. Add to that the fact that my brain is like a giant ball of jello and my nerves truly are frazzled. I am normally a pretty sharp person mentally. It is one of my strongest points actually. And, even if I am not the smartest guy about a given topic I make up for what I lack in knowledge with hard work, research and sheer will power. In other words, I will work to make whatever happen as it needs to happen.

But, the situation I find myself in, however, does not lend itself to this sort of solution. Cancer doesn't have a "do or die" component. Working harder is like struggling with quicksand. The harder I resist the worse the situation gets. Between all the medications I am on, the messed sleep schedules, the physical pain and disorientation, plus, the plain void of certainty with which I look at each day I truly wake up each day and say, "God I don't know how to do this. Only you." This is my way so saying I am surrendering. Yet, this is not a surrender where I had some part of my life that was not His yet. I am so completely his at this point it is impossible to think of anything else. Each day is like staring at a blank, dark canvas. I see no future. The past is sealed, and, with my failing health and closely shrinking present/future it is hard to argue with life.

As a man I stand here, lost and angry. Kerri and I agreed when we got married that God was in control of our lives. Completely and totally. It took a while for that to come to pass, but, here we God's finger tips. Yet, standing here, living in this single moment is probably one of the hardest things I have ever had to do. In the past, things just got better given enough time. Now, things not only get worse, as time passes, the complexity and difficulty of the problem grows with each passing day. Ironically, the cancer that caused all this, DSRCT, is not even the thing to blame. It is this secondary malignancy: the bone cancer. I live from transfusion to transfusion, praying each one will not be the one where I get told, "It's not going to work this time. You are dying."

I have had that thought many, many times. Apparently, at some point, the body will begin to reject platelet transfusions because of antibodies. I have yet to research what that looks like because, to be honest, I am too scared to see what my end will probably look like. I know God could do a miracle at any time and I pray, on my good days, that he will. But, those prayers are fewer and further between cries. I seem to have fallen into a very secular, lost sleep like state where my focus is on survival. I try to get from one moment of "escape" to another. Escape here means a time and place where things are "normal" and I am not worrying about that nose bleed that won't stop, or, that weird pain I can't describe. These are real things, real forces I hit up against every day, and, in the face of what I deal with, I can't bring myself to admit that I will probably die.

Last night, Liam was praying and said, "God, please don't let me daddy die soon." Kerri and I looked at each other when he said that. Our kids often say things that are prophetic in nature and I got awful frightened when I heard him utter those words. God, was that you talking to us? Were you preparing us for what is coming? Was it just a 5-year old expressing his fears? Did we place too much weight on a little boy's hope for his daddy to get better? Truthfully, we don't know. I know, since he said that, I have been scared witless. My body is struggling. We saw numbers recently, along with some symptoms, that make us thing I might be struggling with diabetes. When I look in the mirror I see a 210 pound man I cannot recognize to save my life. When I was in Houston after the surgery I got up to 215 pounds. Never in my life have I been at 200 pounds, much less at 215. Yet, here I am, running in the 200's for my blood sugar levels. Sweet smelling breathe, swollen face, inflamed ankles and knees. Pain roaring throughout my body.

My pain management team told me that I am going to get addicted to the drugs I need just to deal with pain to get around. I have been trying to lose weight to keep the stress levels down on my structure yet it is not working. I can't control what I eat. I can't breathe at night when I sleep and am starting to get sleep apnea. I am not a person I ever thought I would be. Yeah life throws you curve balls at times. That's to be expected. What I am looking at, what my family is looking at, however is not a curve ball. It's a freaking bazooka blast from hell. Am I doing anything more than daydreaming to hope for a miracle? I know we will all die. Yet, death is one of those "one day...after I have lived my life" kind of things. Not now. Not in front of my children. Not when I am unprepared. I feel like I am leaving my family wide open for attack and I have failed them as a protector, a provider and a gather.

Losing my job is a real fear. Having no money. Having no insurance. Losing our house. Having to tell our children dad is dying and we must leave this home. I dread even the thought of such conversations, and, yet, I find myself having these kinds of conversations in the depths of my soul in the middle of the night. There are days when I lose ALL motivation. I feel so overwhelmed that even getting out of the chair is too much. Am I depressed? Probably at times. But, what am I supposed to do? Jesus is not riding in like a white knight on a chariot. Yes, we are getting what we need. But, in the end, I am just a guy hoping for a miracle. Plain and simple. Frankly, that's what we need too.

I need my bone marrow to start working again. I need my body to shed weight. I need pain to stop. I need strength and power to revitalize my bones. I need God and all that he is. And, yet, I stand with just a few, revving up my emotions, my thoughts and my will power to get through the day. I know David and Hezekiah had to have had days like that and worse. It is my own body that has betrayed me. When your friends desert you, you still have your health. When your health flees, there is little left to turn to and hold onto. I have to admit, there are times I wish I just never woke up. A way where it just ended and the torture would just be over for all of us. Kerri chides me when I talk this way reminding me that, no matter what, being here, in sickness and suffering, is far better than a family without its father.

Now, before anyone gets on the phone and starts freaking out, I am not wanting to die. I am not wanting to commit suicide. I am not wanting any of that! I am being as clear and explicit as I know how to make sure folks know I want to live. The sentiment I am expressing here is the desire that things would just end and life could go on. From what I have seen of the way DSRCT takes people out, it is a slow, long, torturous process. And, sadly, that is not even what I will likely die from. My secondary cancer is likely going to lend to an infection that cannot be contained or a bleed that cannot be stopped.

I remember this scene from a movie called "Drive" where one of the characters is killed by a razor slice to a major artery. The killer tells the victim there wouldn't be any pain. I wonder, if I bleed out, is that what it will be like. Just a fade to black. A transition into nothingness before God releases me from this mortal coil? Do I want to think about how I am going to die? Of course not. What I am stressing about is the process of death. I have no fear of death itself. I know that God has sanctified me and awaits me on the other side of that transition from mortal to freed spirit. What I fear is the process. Will I be stuck in a hospital, slowly being poked and prodded, drugged, mortally out of control. That has been one of the most painful things about all of distress at loss of control. It was doctor's orders to do things I would not otherwise do. Now, however, I find myself unable to control my own actions. I simply do what doctors tell me, or, what drugs level me to do. Being in one's own self and unable to exercise the simple power of my "self" is frightening.

Will it be painful? Will I die disgraced, covered in blood, my children running from me at the disgusting sight I have become? Shall I merely be a shell of my former self? As it is, I am barely recognizable even to those who know me and know me well. Add a complication, perhaps a trac tube, and, some other issues and I will be one of those medical freak shows. What a horrific picture this paints! These are the thoughts I live with most of the time. I want to go back to work. I want to get back to life as normal. I so desperately want to be that guy who used to run at 5:30 every morning. The old me. And, yet, I know, that person is gone forever. Now, I am just connected to that person my memories, by pictures, stories, recollections. I am forever a shadow of who I was. And this new person I am I do not like nor recognize.

I do not despise myself, for, I am trying, as best God allows me, to love who this new soul is. Yet, in the process of becoming what God would have me be, I stand baffled, seeking thankfulness. I am yet, in spite of all what has just been said, alive. I can still walk. I can still talk. I can still hug my children. I am not in prison or suffering beyond what is possible. I keep grasping for something, anything to help me stop this slide. I am reminded of this one time I slid down the side of a huge hill at Stone Mountain park outside Atlanta. I had slipped too close to the edge of a trail and gotten to a point where I started sliding and could not stop. Thankfully there was a gate to catch me. Without that, however, I would have been gone. Right now, I am looking for my "gate" and grasping in hope and faith to express thanks in spite of everything is the only way I know to try and stop the free fall.

God, I am thankful for today. I was able to see my son go to school. I did not honestly think that would happen, or, to be more precise, that I would see that. And, yet, I did. I sit back at times and wonder, how many more moments will I be blessed with? Will I see Page reach 10? Emma? Liam? Will I see my children graduate high school? Get married? Grandkids? In the back of my mind, part of me intuits a no, but, that is all it is...intuition. My intuition so far has not been perfect, but, it has been pretty accurate. I thank you God for this. For this moment. Sore throat, throbbing ankles, burning throat, exhaustion induced double vision  and a sense of purposeless and emptiness unlike anything I have ever known. In spite of all this, I continue to hold onto my prayer, "I shall not die, but, will live and declare the works of God."

It is this prayer, this life raft that frightens me more than anything else. What if God DOES allow me to live? My body is becoming a broken vessel and restoring it has proven, so far, to be impossible. But, if I live through this, what will that look like? A 36 year old, hobbled man, incapable of running to save his life. Is this broken instrument Lord something you delight in? I want to live God out of sheer will power. And, yet, I have to stop and wonder: what is if you want to keep living for? God's great works, his miracles, are worthy of being proclaimed across the earth. Were I to be one of his great works, one upon whom a true miracle was bestowed. Living in pain, in constant fear, uncertainty and the unknown. That is a place I cannot envision one dwelling.

And yet, that is precisely what I seem to be begging him to do.  Let me live to reflect his glory. I truly want people to know God's goodness and mercy. His love and magnificent grace are amazing. Supernatural power beyond compare. These are things I want to share with the world as God has shared them with me. I have no idea what my future holds. None whatsoever. Sure, as Franklin said, "Death and taxes." I say that tongue-in-cheek, yet, my hope is to highlight the fact that I will die, as will everyone else. My awareness and focus on it is just that much sharper and more acute these days. As Paul was broken for the kingdom, I look at myself and wonder, "Lord, is this truly for your good? Or, was this purely a consequence of natural evil?" To tell the truth, I don't know one way or the other. The best I can do is to try and reconcile the hand life has dealt me with the faith God shone through his son Jesus Christ.

I stand, hoping for the ability to confidently answer that question one day. But, standing here, looking backwards of the past few years I get the impression that God doesn't want me to know the answer. He wants me totally dependent on him. I liken it to when you grab a pair of charged electrical wires coming from a wall. If you grab a wire plugged into the wall and allow the current to pass through your fingers, you get "shocked". Your hands recoil naturally and lets go. In a way, it seems my life is one where God wants me to grab the wires, to hold onto them, and, not let go. Living in the present is like grabbing a live wire. The power overwhelms you and your natural response is to let go and drop it. Yet, if you can hold on, living in the present, that is, being fully under the power of God's Holy Spirit, can revolutionize your life and transform it into a miraculous conduit between heaven and earth.

Though I, at present, am not holy, and, am unable to be one who acts as such a conduit, one of my prayers is that this life I am suffering through, this misshapen existence I call life, will allow me to be one that shows God's goodness and reveals his heart. I may be dying, as we all are, but, if I must, I pray that God would allow me to do it with dignity, grace and love so that the lives of those I have touched will be made better as a result. This is my thanksgiving prayer: God may you take my pile of brokenness and transform it into something worthy of your name, your kingdom and your glory. What this looks like is beyond me, and, I know I have written far, far too much, but, m hope is that, somewhere in here, there something that ministered to others. My life, Lord, is yours and may its essence truly be an eternal gift, however, that may work. For this....Jesus, I am thankful.

Friday, November 16, 2012

To hook a fish and have to let it go...never was my plan

To say I am a career-oriented person would be a bit of a stretch. I wanted to be a professional athlete until I was in my mid-20's. It wasn't until I got in the workforce that I started to play catch up for lost time. After a few different fields, I finally ended up in an niche of IT that I really enjoyed, did pretty well at and was beginning to form a future with. In short, I had finally found a place in the working world and was getting used to it. That is, until cancer decided to butt its head into my life and gut any plans I and Kerri may have had for the future. Ironically, the job I have was the first time in my life I felt confident I had landed in something good with a future. And, look at what happens. Seriously? How does that work... To go from "Hey, I've got a job, I'm making forward progress, really honing some specific skills" to "how am I going to be able to even make a full work week?" is a pretty radical shift.

I guess most of my life has been blessed to the point I never realized it. Whenever big problems would arise, I would knuckle down, gut my way through whatever was going on and, given enough time, the problems typically disappeared. What I face now is of a different nature. Baring a miracle, yes, a literal miracle, this is not something that I can close my eyes and wish away. One of the biggest rubs about all of this is that I have spent the past 6 or so years building a library, refining skills, learning my trade with the hope of becoming an expert of sorts in what I do. It took me a few years, but, I finally latched onto this one computer program from Microsoft called PowerShell that looked like it would take me far and wide. At least, as far and wide as I was going to go. Over the past two years I have really made some major headway towards that those highest levels of skill with the tool, and, as with the rest of all this, it looked like I had a really solid trajectory to hit my goals.

Suddenly, in the past 6 months, doors have opened, people have connected with me and I with them so that I really could start doing some heavy work in the community. I was excited. I helped start a user group where I live. I actually got a few articles put into online blogs (not just my own) and I even started working on a chapter for a book. That's actually still in play at the moment. All this is to say that, in spite of my diagnosis and condition I still forged ahead into this area and continued to make progress even though I was operating at maybe 40%. In the past month I have had tremendous opportunities present themselves. And, here is the rub. I have had to stop, take a real, hard look at what I am doing and let these opportunities pass me by. I feel like such a flake. I spend years cultivating a skill and, just I get the chance to start using it at a high level, am basically told in my spirit, "You really are not in any position to do this. You need to let it go."

I don't know about yet, but, spending years of my life trying to become something only to have to let it go as soon as its in your grasp is a kind of disappointment I had never even known to consider. Being the one who begs and works to get to the inner circle just in time to have to stop, back up and apologize, "Sorry, I am not supposed to be here." Man, that has been one of the hardest pills I've ever had to swallow in my life. I guess, in the end, it is a matter of pride. I have been accumulating my works, my deeds, my efforts, into a chain of events and ideas that built me up as something special. And, in the end, God seems to be asking me to let it all go. The deeper rub is that I am letting it go not because there is something better for which he has destined me (at least not that I know of) but simply because I am impotent to use the power built up over all these years.

There are no conferences for me. No books. No speaking engagements or teaching of classes...or magazine article...or...or...and...or. You get the drift. No, I am letting it pass me by out of obedience to God. Now, I look at it and see prudence, practically, wisdom and all those great things. However, prudence, practically, wisdom and all those great things do not shift my life in another direction. It's not as if letting go of my PowerShell ambitions will cure my disease. Hardly. No, the real rub here is that I feel I was allowed to pursue something to the point of attainment only  to have to choose: God's way or yours? So, we're back to free will are we? In the end, yes. I can choose to follow what I sense God's nudging is (to stop wasting my time messing around with computers and get busy loving on my family and friends) or I can do what I want (vainly pursue happiness in little bits and pieces, hits of happiness spaced out with long periods of desperate effort trying to get that next hit of happiness).

One of the killer ironies here is that I have had this same sort of cyclical pattern in other areas of my life. This one is just marked by much deeper reliefs and the depth of the situation are much, much more extreme. In the past, with running for instance, the pattern was I'd set an unrealistic goal for myself, train for 6 months, fail to reach my goal (but still do exceedingly well) only to feel like a failure. Here, however, for the first time, I actually CAN reach my goal but am being asked not to. That is novel...and, frankly...pisses me off more than I can say. The first time I actually get it right and I can't even revel in the little bit of glory I found through my hard work and good fortune. God, you really are mysterious in your ways. Right now, I say that more with frustration than awe. For now, it's back to bed. Maybe God's got a script I can use to make sense of all this! Man, I'd be willing to pay money for that...

Saturday, November 10, 2012

And then there was 36...

It has been a while since I have had a chance to post. There have many good and some not good events take place in the meanwhile. My parents coordinated celebration of life just in time for my birthday in Baton Rouge. So, while I turned 36, I was able to visit with over probably 200 friends, family, coworkers, classmates and the like. All in all, it turned out to be an amazing event. We were blessed by a friend of my parents who was able to line up a private-chartered flight from McKinney to Baton Rouge. The kids were very excited about the opportunity to fly on their own plane. Kerri was nervous about the flight, but, fought through it like a trooper. When we got into town it was straight off to the medical races as usual. We spent a good bit of Thursday, my birthday, preparing for a transfusion at the Baton Rouge General on Friday. The transfusion itself was scheduled to take much longer Friday than it really took thanks to the efforts of several folks.

Saturday morning started earlier than I had hoped it would as I was unable to sleep well. So, I got up early and tried to help out as dozens of friends, both my own and my parents, were there early to set things up. Wallace and my dad got the jambalaya off and running while Mr. Eddie and Mrs.Jeannie LeBlanc helped set things up around the house. Also, some of my mom's friends were helping out, spreading things around and being awesome as well. Unfortunately my memory is not working so well these days, otherwise, I would call each of you name for all you did. Friday night, as we left the hospital, it was unseasonably cold as light winter weather slipped into town. Saturday morning had a cool overcast cloud cover rest gently over town. I was nervous it was going to be too cold for folks to make, but, many rightly reassured me it was just early morning cloud blanketing town. Thankfully, they were right. By 10am the clouds dissipated and we were able to get on with the events.

The official kick off was 11am, however, from the rhythm of things, no one would have been able to tell any different about 10am. Things were in full motion. The bounce house was up, family was in from out of town, the music was going and jambalaya was flowing right away. In short, it was on. Early on family from New Orleans and the north shore were visiting. High school and even middle school friends, along with their families, both old and new. It is always exciting to see how others are growing up as well. We have our three, Page (8), Emma (7) and Liam (5), but, it is funny to see a few teenagers amongst the crowds, and, going on down through the ranks. In fact, one of my friends from middle/high school, had her son at the party. He's already at Catholic High. Very cool to see the cycle close up.

As the day wore on more and more folks came. I couldn't really keep up with all the faces, but, did enjoy the conversations. I wish my memory were working better so I could recall some of the names and faces. At any rates, we did see a lot of folks from our various communities as well: church, family, school, sports, et cetera.  Towards the end of the day we had to slow down some. My body could not keep the pace, although, for the most part, I kept up very well with energy and pace of the party so far! I found myself sitting and resting a good bit more. It had been a long day after all. With the sun setting we moved into a tent and put our feet up around a makeshift campfire. It afforded me the chance to catch up with a few folks I rarely get to talk. That was nice.

On Sunday morning Kerri and I escaped to church by ourselves as the kids elected to go to Nonna's (my mom's Catholic) church. We went and found ourselves unintentionally at the middle of a large prayer circle at Life Point. We were deeply at how God moved in the service and touched us through the hands, prayers and
praise of a large portion of the congregation. Again, later that evening, I was able to receive deep, refreshing prayer yet again through the ministry of one of the Messianic congregation's ministers. It was a real honor to be such a part of healing, prayer and a deeply, spiritual time over the weekend as well.

As we said our goodbyes Monday morning we flew back from Baton Rouge before another chartered flight back to McKinney concluded our events for the weekend. The kids were ready to head back home after such a busy weekend. For all the fun we had, they were ready to sleep in their own beds, as were mom and dad. Nonetheless, we all want to say thank you, from the depths of our hearts, to all the people who were involved in making my 36th birthday the most memorable birthday of my life. While others settled back into the pace of the regular, weekly routines, it truly was amazing to realize how much I have touched the lives of others. Thank you God for letting me see who all I have connected with; the blessing was all mine.I only wish that sort of blessing on others as well.