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.

Tuesday, October 16, 2012


In the world of cancer treatment things never seem to stop. There's always another appointment to get to. Another doctor to see. Another lab to run. Another something. In my little corner of the universe, I have kind of hit a bit of a flat spot in that repetitive routine. I have been able to step off of the medical treadmill onto the hospice one. I was pretty scared about that at first, but, actually hospice has been pretty good for me. We found a medical support team that can help me get what I need without a lot of fuss. Since I'm not actually doing any chemo, it consists of labs, transfusions, and, follow up doctor's visits. Compared to my past, this is pretty tame. It used to be much more volatile, lots more ups and downs. In a way, things are simpler, and, for that, I am thankful.

The flip side of this is that I am not in a place where I am looking for a cure. When you go on hospice the basic understanding is that you are no longer trying to find a fix for your problem. You are admitting defeat in a way. Yet, in my situation, I don't really have any other options. The truth is, my original cancer, DSRCT, is under control. I am pretty thankful for this. But, we are dealing with a completely unforeseen demon now: bone marrow and its failure. It is not uncommon for DSRCT patients to run into issues with secondary cancers. We don't know if it was caused by my broken leg. We can speculate, but, regardless of the cause, I am fighting something we never figured we would take into account. We went through a lot to get DSRCT under control. We did that. Then, out of nowhere, comes this unnamed cancer. Great. Thanks for that one Lord.

Yet, I have to stop and be honest. In all the wondering I have been doing, all the fuming I have been doing at God, at all the frustration and disappointment I have come from a bad premise. We in America live with this myth in our minds: we should expect to live an old age with every right to wealth, health and happiness. No where in the Bible does God promise this. To be honest, I was insulted by God when I got diagnosed. Who am I, a perfectly healthy, law-abiding man who loves his family, to be inflicted with disease? God? You think it's okay to screw with my life? Now, let's stop for a second. If you look at the Bible, I want you to find a single verse that gives me the right to believe this myth. As far as I know, there is none. God does not promise us a long, healthy, problem free life.

In fact, if you look at scripture most of the men and women we look up to spiritually, their lives were hard, broken, pain-filled, confused, difficult and hard to explain. How would we in America sell Christianity if you told people this truth? We wouldn't. Christianity would dwindle. So, are we honest with our faith? Are we willing to talk about death? Cancer? Pain? Doubt? Maybe. But, it takes a certain spin. We have to struggle to balance our reality with our hopes. I mean, really, I hope to be healed. I hope for this long life. I hope for the things this myth throws out there. Yet, where does this hope come from? Does it come from God? I don't know, to be honest, I am just figuring this out as I go along.

Part of me hates talking about this stuff. It's ugly. It's confusing and hard to make sense of. Yet, I look at it and take a single stance, one, I hope, will help me find truth and hope. I basically assume God is good and He loves me. What does this have to do with our misleading myth? It creates a tension. I look at my life, with its disease and the threat of death. And I look on the other hand of the promise of eternal life Jesus put forth. Eternal life and life here on earth are, as far as I can tell night any day. We want life to be easy here, to be simple and straightforward. It's anything this moment. I have to stop and look back, however, over my life and recollect the blessings He has given me. I can rail and lament about where my life is NOW, but, the almost thirty six years prior to this were charmed.

I live in one of the most blessed countries on earth. I have had amazing health, far greater than I knew, my whole life. Money was never really a concern. I never went hungry. I never suffered, not truly suffered, and, I never experienced true fear. I'm not talking about fear of being liked at school or fear of not being accepted. I'm talking about fear of being killed by robbers. Fear of being unjustly treated. No, I stand, for a short period of time, in a difficult spot, but, my life has been blessed. That is the truth of my life. Cancer has obscured this. I seem to have gotten a very short memory since it has struck. How many people have short memories like this when the goodness of God is eclipsed by difficult, most of the time, or, true evil, on those rare occasions. Either way, there is a tension between my ideal life and my real life.

Right now, although I have been through some really rough things in the past two years, I am able to breathe a bit. We look forward and cannot say for sure if I will live or die. The truth is, I will probably die. But, I don't know for sure. Technically, I am losing health. Yet, we are still looking at some other things. MD Anderson might have further options with regards to my secondary cancer. I am not sure about this, but, we are at least looking at it. For now, I am in a little bit of a holding pattern. I look over the past few months and see my health is declining, yet, I am not on my deathbed. I am not at a complete loss. So, I have to stop and reconcile today with the tension I feel. How do I take today and tomorrow and walk them out? One day at a time. That is, right now, the only way I can do this.

Ironically, it's really scary. Jesus talked about not worrying about the future or what it brings. Living in the moment, that is, not projecting into the future or drawing from the past, no, living here and now, is really, really hard. Honestly, it's a lot easier to buy into the myth of a golden tomorrow than it is to be present. Having our attention somewhere else all the time, as the of a golden tomorrow lends us to, numbs us to what is happening now and robs us of our power, of our ability to really be where God wants us. When we are building a scaffolding of hopes, crafting plans, coping with the stress of how to pull it all off, it's a really nice mouse trap. And, we spend a lot of time tweaking this, keeping it going and living void of an awareness of what's really going on here and now. It's a trade off. We can be present, and, live here now, but, it means we have to stop thinking about the future. Lots of people are afraid to do this. I know I was. Heck, I still am.

My present, living here and now means I have to admit I am possibly, if not, probably dying. Who wants to think about that? Who wants to be fully present in that reality? Certainly not me. No one wants to go there, much less set up shop and hang out a while. It makes for hard holding onto hope. And, yet, again, I come back to that fact that my hope is not on today, but, on an eternal reality, a tomorrow not yet come. So, I have to stop myself, ask, wonder, God, how am I, a mere human, supposed to stare death in the face and hold onto the electrical socket of hope and eternal life. When the reality of this hits me, it jolts me back to my senses. Yet, I can't hold onto it for more than a short time. It's too powerful, too raw, too amazing. I mean, really, God, your love is too amazing to live in for more than a moment.

Maybe it's my sinful nature. Maybe it's my weakness. I don't know what it is, but, staying "on", that is, living in hope, staying in the present, shrugging off the myth and its comforting promises proves virtually impossible. So, I sit in my plateau, and, it's humdrum routine of predictable patterns and rhythms, thankful I can just sit back and not have to worry about what's next. Being constantly on is draining. It's exhausting honestly. Living in an adrenal rush all the time tears one down. It makes for poor living. The hope is to one day get out of it. But, for right now, my only way out is death. That's a horrifying thought. Unless a miracle walks through the door, this is my reality. And, yet, it is one that seems to be standing at arms length. So, I stand here, weary, staring into the distance, waiting for the next attack, but, thankful I can see a little in front of me.

I wish I could say something more spiritually momentous. This, the realization that my "reality" was a myth is momentous enough if you ask me. God has, as Jesus outlined in his statement, "I am the way, the truth and the life", shown me the truth about my life. I cannot stand on a false premise any longer. In a way, being stripped of the lies gives me a chance to build a real, deeper relationship with God. It is pretty? No. Not really. But, it is real. In way, it is a question of substance versus appearance. Trying to reconcile the differences between what I see (the appearance of God and his holiness) and what is (the reality of God) ultimately is the root cause of my struggles and the life I have before me. A plateau, a resting point, in this reconciliation process allows me to stop and look around.

I don't necessarily like what I see, but, God is at least giving me the chance to see what's really going on. That's the truth. God is letting me know him, as he really is, and, I should, for that, be thankful. Am I thankful for cancer? For the disease? No. For the greater relationship with God as a byproduct? Yes. It is a mixed blessing and I have a hard time seeing God in all that is happening. Nonetheless, I cannot help but look for him. It is just part of my make up. Hopefully, this plateau will give me a chance to find the most real relationship I can with God. I know reality is more of a Greek virtue than a Hebraic one, but, in the end, I am thankful I can at least stop long enough to look around see what's going on. I could view right now in whatever light I choose. So, I am choosing to try and find how God wants to use this flat spot for his glory. Let's see where you want us to go.

Thursday, October 11, 2012

A little update

This week has been my first "down" week in I don't know how long...and it's still busy. We have had a few folks come by to pray with us and visit. Yesterday Landon Snoddy and his dad Richard visited. Landon lives in Seattle and his dad lives in Baton Rouge. They both took time out of their schedule, to visit Richard's dad in Fort Worth, to come by and pray for us. Also, our lead nurse from the hospice group, Danette came by to catch up with us. We are working with a new oncologist even though we are technically still on hospice. His name is Dr. Birenbaum. He is a story unto himself, which I'll save for another day. Nonetheless, he had made some changes to my medicines and Danette wanted to get those recorded so the hospice group was up to speed on what all I was now taking.

Although it was not the first time I had heard these things, she was very clear to point out some potential issues down the road. First, every time I do labs my glucose levels are very high (around 200...and, they should be around 100). She asked if I had been talked to about diabetes or pre-diabetes medications. Both Kerri and I said no. Inside I was raging with anger at the thought of yet another "condition". Every time I talk to a doctor or nurse they seem to uncover some complication or factor that will make my life more difficult. I don't always act on this information, but, it is usually the case that I am "worse" after talking to medical professionals than before. In other words, I have no "good" doctors appointments. Typically, something is wrong that wasn't there before, or, at least I am aware of some problem I didn't know about beforehand.

The second issue I have is high blood pressure. Otherwise, known as hypertension. I regularly go in for transfusions and see numbers like 150/110. I don't know anything about blood pressure levels, but, apparently, this is high. This morning, after Danette gave me a blood pressure cuff, she asked me to monitor my levels a few times a day for a while. This morning it was 127/87 with a pulse of 83. To me, the pulse is a little high, but, nothing out of the norm. Yet, I frequently get asked, when doing transfusions, if I have recognized issues with pressure. I tend to shrug it off. Many times stress or low blood volume can cause issues with these numbers. In my case, I hate being at the hospital doing transfusions, so, I wonder how much it has to do with my mind more so than my head. I appreciate the fact that my hospice team helps me. They do a great job. Yet, I hate the fact that I am on hospice. I resent being 35 years old and having all the problems I do. I look at people my age and often think, "How nice it would be to just have a normal life, worrying about my job, kids, marriage, the normal things." That, however, is not the case. I have my own little niche in the universe and it involves high blood pressure, doctors appointments, glucose levels, tumors, platelets, etc. Nothing I want to think about.

So, I will be trying to make some changes to my diet...again. Since we learned about my cancer we have been waging this war on diet. At first, before I started therapy, I did a radical, all-out diet that was basically raw foods. I lost a lot of weight, was in great shape, and, felt great. As soon as I started chemotherapy I threw my hands up in the air and said, "Screw it." To date it has been a back and forth war between eating horribly and trying to do better. Right now, I am in the "I need to do better" mindset cause I would rather avoid getting on medications as much as possible. I really am on a remarkably small amount of drugs for my condition(s) at the moment. If I leave it up to the doctors they will change they. First, they put you on one thing for a given condition. Next, they put you on something else to offset the first drug. Before you know it, you are taking 20 medications to get through the day. Instead, I will try to change what I put in my mouth to avoid it if at all possible.

Here's the rub. When I "eat" this way, I hate it. There is no pleasure in eating. It's all foods I hate. And, I never "get a break". There are no breaks when you are on something like this. So, it's not the kind of system where you can eat well Monday through Friday, and, take two days off. No, those two days will destroy everything you will have done the other five. In short, it, in and of itself, is another regimen I have to maintain. When I get into this pattern I look at everything and see torment in every direction. God, I can't exercise. You took running away. So, no pleasure there. You took away food. I can't enjoy that. So, no pleasure in what I eat. I can't go out or stay up late. In short, enjoying life is really hard when you are doing nothing but trying to stay alive. Add on top of this the stress of a disease with no cure and a secondary type of cancer with no name and voila, it's easy to get under the weight of it all.

There are moments where I find joy. Little times here and there. Yet, most of the time I am sitting around, quietly fuming about how much my life is like a prison sentence. I used to try and "spiritualize" my disease thinking this is some lesson God is using to teach me how to glorify him and honor him in the face of horrible circumstances. As it is, though, I don't know what God is doing. I hardly feel like He is around. And, as much as I hate to say that, because I know He is here, it just seems like I am lost, left behind and forgotten. My mind eventually turns back to the usual rakes ("Why are you allowing this God?") and coals ("Will you heal me?") but those never get me anywhere. I wake up every day, still sick. Unhealed. Doubtful. Distrusting of this God who will "save" me. How am I supposed to trust the same God who let me go through this? Is this God's love? Is this a "good" God? Job keeps coming back to mind each time I turn to this box of questions. And, yet, in spite of being pointed to this book, I avoid it. I don't really want answers. I want freedom. I want this all to be a distant memory.

My prayer is from Psalm 118, "I shall not die but live and declare the works of God." As I read this, I want to be free of disease, able to look back and praise God for his healing works. That is my hope. Yet, I hear high blood pressure. I hear pre-diabetes. I hear bad report after bad report and it becomes harder and harder to hope in this vein. It's like I am climbing a skateboarder's half pipe. The "closer" I come to going vertical, that is, towards reaching God, the more my humanity, my gravity and weight, prevents me from reaching my goal. I get to a certain point and slide back down the ramp to a given point. So, I start climbing again and slide, and, climb again, then, slide. Amidst this crawl towards grace I fight of doubt, questions about "Will I ever work again?" And, "If so, how?" "How do I honestly praise God with my lips when in my heart all I feel is hatred and anger?" My walk feels like nothing more than that of a hypocrites' limp. I crawl towards God, hoping, pleading in my heart, that, he will cure me. Yet, in the depths of my heart, bound like a slave to death, doubting it can even happen.

When the disease was finally identified as desmoplastic small round cell round tumor (DSRCT) we looked it up. Scientifically, it's basically a death sentence. And, every time you see a doctor, they remind you of this. The nickname for this cancer is the zombie tumor. Even if you get it into complete remission (which we did) it comes back. In the less than 1,000 cases they have seen only a handful have truly been cured. And, that handful is in the order of a few dozen. So, how can I, someone who had 268 tumors, hope for something as improbably as that 2% chance? In my mind, I stand between two cruel fates: 1) a long, slow death riddled with failure after failure, much like I am seeing with one system faltering after another until, in the end, the weight of death just collapses on the whole system. 2) a fast, painless death. For my sake, I long for painless. But, then, I feel selfish because it means my family is left here without me. And, at times, I wonder, how "here" am I anyway. I am constantly distracted by some issue I am wrestling with. I feel like the worst possible father and husband because my life consists of trying to survive.

This morning Page picked up about a 40 pound case of water so I wouldn't have to because "I shouldn't be doing it." No eight year old should ever have to tell her father she will do something she shouldn't have to because her father is ill and must be taken care of by his children. God, you call this justice? You call this love? How am I supposed to give my life completely to you when you have opened me to satan's destruction without respite. He is stealing, killing and destroying me, my family and my life day by day and you stand by watching, unwilling to lift a finger. God, I wish I could see something to praise you because, at this point, I see darkness on all sides. Even when I turn to my imagination in hopes of seeing some distant memory, a faint recollection of your goodness, even it fails. Where, God, is the Book of Failure? What gospel or epistle is that? What am I supposed to do in the face of despair and loss like this? You are the God of answers. The God who knows all. Can you please direct me because right now I don't know what to do or where to go.

For those of you praying for us, I am sure you can find things in this post to lift us up. I have update the prayer list with some new requests according to the things I have talked about here. Hopefully, as I turn my focus towards getting some of the things I hope to accomplish done, you can pray me through my spiritual blindness. I am thankful for the prayers and help of those standing with us. As you can see, even with all that help, it is still a great struggle to make it through these days. There are other issues, things I cannot go into here just yet, but, which need as much prayer, if not more, than I have laid out here. So, please, take a moment to lift us up. I know it is difficult when there seems to be so little to praise Him for to fight, but, if you could, please do. Here is the updated prayer list.

Monday, October 8, 2012

When God grins...

I am a big fan of synchronicity and oddity. There are moments that happen in people's lives all the time that are beyond mere chance. Yet, the pattern connecting those moments and the ones leading up to-and perhaps following-are so disjointed it baffles the brain. This past weekend I had a series of events unfold that fall into this category. If you know me well you have probably heard me lament how boring and predictable my life is. And, yet, if you know me well, you know probably also know that bored lament is total nonsense. I have so many odd things happen to me it really is amazing. I try, when I am clear minded, to record them for posterity, but, often don't catch them in time. In this case, I am going to write about this past weekend to remind myself, my life is a little less ordinary than I like to think.

Being a former distance running geek I used to visit, and, really, still do visit, a website, called It has a lot of great, up-to-date news on the sport as well as a forum. Now, the forum is really like a bar where people hang out. Everyone has their corner of the bar and it can be a bit of a rough and tumble place. Nonetheless, it is home. Earlier this year I started a new thread to record my progress towards getting back into running shape. I wanted to try and see if I could run 20 minutes for 5 kilometers and figured I'd track my return to fitness for other cancer survivors to see. Now, I started this thread before I relapsed and before my bones really started failing me, so, it was really with the hope of becoming a competitive runner again.

After a few months I got a random email from a guy named Ken Martin regarding cancer and exercise. As it turned out, Ken is a former elite distance runner who still is passionate about the sport and, having developed cancer himself, began to research the benefits of exercise and cancer. In my case, I was just a guy with cancer and he felt he could share some info to help me out. Here's where it gets fun. In 1990, I read an article about Ken in Runner's World, a magazine dedicated to the running community at large. At the time I was a slow, highly motivated high school runner who wanted to get better and was willing to do anything to do it. I contacted Ken about remote coaching to see if he would help me and he promptly turned me down as I was still so young and he felt my high school coach would be sufficient. That was that, and, I never got in touch with him again.

Well, lo and behold, I realized that this was the same Ken Martin and I told him about this. We both thought it was a quirky coincidence and just kind of shook our heads. Neat, right? As we kept in touch and I learned more about Ken, I found out his is working to create a fund to help researchers explore the relationship between cancer and exercise physiology. Both of these areas are of immense importance to me and I felt an immediate call to action. I offered to help Ken out however I could and we continued to go back and forth via email. Finally, Ken mentioned he was planning on coming down to Dallas and wanted to meet me and the family. I was excited about the prospect, so, we penciled in some dates and worked to find a time to get together.

I am always looking for ways to help out with meaningful causes and Ken's definitely is one. So, I had two avenues I wanted to look into: 1) a CBS reporter who had interviewed us about the cancer cluster and 2) Weldon Johnson, the owner of, who happens to live about an hour away. After I reached out to both the reporter and Weldon I got Weldon to agree to come out and interview Ken regarding his work. This way, I figured we could spread the word about what Ken is doing and get news out. Plus, Ken is attempting to break the over 50 men's mile world record to draw attention to his fund. He figures, if he, a stage IV cancer patient, can break the world record why should other people not look towards exercise as a legitimate means of a incorporating exercise into therapy. Things were starting to come into shape.

Now, here's where it gets even cooler. Ken had invited a friend, Aaron Ramirez, an other retired elite distance runner, to come up and hang out. Aaron was a 1992 Olympian at 10,000m, former NCAA champion in cross country, sub-28 10k runner, 13:20 5k runner. In short, a beast. Aaron lives in south Texas these days and, as one of Ken's old training partners, saw it as a good chance to catch up with an old friend and just enjoy the weekend. So, Aaron flew in and hung out with Ken and I for the weekend. To take it up a notch, I remembered, on Saturday morning, right before the guys came over to the house, that I drew a picture of Aaron in high school for art class. Here is the picture I drew.

Now, what's even cooler is that I thought, at first, the guy in the background, was Ken. I would have been so blown away if this picture I drew in 1990 was the same two guys who showed up in my house in 2012 through this totally unrelated set of events. As it turned out, the second guy in the picture was not Ken. Nonetheless, what are the chances I would have drawn this picture, and, 22 years later Aaron shows up at my house? Impossible statistics.

So, Friday night Ken, Aaron and I had dinner and Thai Frisco. We just chatted, hang out and had a good time. Saturday afternoon, we all went to the house and had Weldon come over to do his interview. We talked for a while and I am eager to see what he ends up using for the interview, but, it was cool. Kerri, my dad and Page went to the track to watch Ken do a workout. As it turned out, it was a horribly cold, windy day. Ken still got in a great workout, but, it was a little altered from what he was hoping to do at first. One of the fun parts was Page "racing" Ken. She headed to the 50m mark on a straightaway while he did some 200m repeats. As he closed in she ran with him and, honestly, kept up. Now, he was running 30-31 second 200m pace and she really kept with him. That's some serious running for an 8-year old! I encouraged her that Ken told us later, "Page is fast." You don't get a lot of endorsements from former professional distance runners as an 8-year old girl. It was a special afternoon.

Once we finished the workout the guys headed back to their hotel. We went to the house warmed up, got dressed and Kerri and I met Ken and Aaron for dinner at Posado's. We had a good time talking, listening to Ken share his ideas and his story leading up to where he is at now. It really is fascinating to hear what sort of ideas and work he has in mind. I am very excited about the prospect of what sort of work his fund will lead to down the road and that is largely why I am in such strong support of his efforts. Needless to say, I look back and, on Sunday morning, the guys joined us for church, to see a really amazing weekend. Things like this don't just "happen". My life really is blessed in some unusual ways. My kids got to meet an Olympian and three amazing distance runners. But, more than that, they got to see these guys are just like the rest of us. Just as I experienced, as a kid, unusual events, I want my kids to understand, life is what you make of it. Sure, we could be shy and think, "Oh man, these guys would never want to talk to us." Or, we could reach out an take a chance. I did, and, thanks to that, had one of the coolest weekends I've had in a long time. It really was a special memory I built with new friends and family. Thanks God for letting me see you grin.

Sunday, October 7, 2012

When lines blur

For as long as I can remember, I have been fascinated by computers. They posed this gigantic puzzle to me. Think of all the fields that have been combined to form these magnificent machines: physics, electrical engineering, mathematics, linguistics, the arts. The list goes on and on. Needless to say, when we use computers, we often fail to realize how complex and how intricate these machines really happen to be. When you talk to people who work with computers for a living one of the first questions you ask to help orient you with their world is are you a hardware or a software person. Hardware people work with wires, motherboards, memory sticks, physical devices of all types. In short, they think in terms of things. On the other hand you have software people. They live in their heads. Software is really an abstraction which, at its most basic form, is little more than instructions. Software is used to allow people to control hardware. In my world, I tend to fall on the software side of things. I can struggle through a hardware issue, but, it is not my forte. Software comes much more naturally.

In either care, computers have been something with which I wanted to completely absorb myself. My hope was to find one area of computer technology I really liked and to dig in, to truly become an expert. As I worked my way through the field exploring different areas I would say my ultimate goal kept shifting. It really reflected, more than anything, what I thought I would look like if I ever "made" it in the field of computers. For some time it was a series of certificates that eluded me. I tried studying for a variety of certs, but, always made it much more complicated than it needed to be and never really got any. Do I regret it? A little. Yeah. But, in the end, not having the cert doesn't make me less of a father or husband or even employee. It just represents one more thing I wanted to become that escaped me. I guess it's a reminder of what I wanted to be but never could accomplish. A mark of failure, so to speak, instead of a mark of honor. In fact, the longer I stay in IT the less qualified I feel to work in it. I guess that comes with anything though.

I can't say exactly when, but, I have noticed, in the past couple of weeks I have noticed, I just don't care about computers anymore. Not like I used to. I was obsessed with them. It would come and go in waves, but, at my worst, I really was more interested in these things than I should have been. These days, however, I have all the time in the world, and, the last thing I want to do it work on a PC. I had been really excited about the opportunity to finish a book I was working on for PowerShell as well as some user group stuff. My health, as it slowly declines, simply does not seem to want to let me go there. PowerShell was the "thing" I had ultimately set my focus on. Yet, now that I have time to really make a leap for it I really don't seem to care. It's kind of disappointing to find yourself in that position. Most people would probably think, "If I could spend all day doing what I wanted I would _________________". For me, it would have had something to do with least in the past decade. And now I find myself listless, indifferent, and, really lacking the passion I had for this thing I once found so fascinating.

Though I wish there was something profound I could tease out of this circumstance, I guess the blaze nature of it, the listless, unimpressed nature of the whole thing is in fact that outstanding characteristic. For once, I am not spellbound by this thing, or, for that matter, by much of anything. My dad and I were talking today about my search for direction. Right now, I really have none. Without work, I am not really sure who I am or what I am supposed to be doing. My dad really suggests I just be listening to God to hear what it is he wants me doing. Lately, it is a lack of purpose, which in the past few months/years was this computer jag, that highlights my walk. Yet, there have been a lot of odd events going on that tell me God's trying to repurpose me, to give me new direction. As it is, I am completely blind to what I am supposed to be doing, but, hopefully God will show me what it is I need to see. The past few weeks have been crazy busy and I couldn't have seen a neon sign two inches in front of my face had a tried. Now, I have a couple of days to stop, catch my breath, focus and listen for whatever it is He really has in mind. If you are praying, please ask that He would give me clear direction, focus and purpose. What it was is not what it now is. There are a LOT of signs things are changing. Seeing what the changes are is the next step.

Monday, October 1, 2012

Unventfulness, just a lot of activity

The past two to three weeks have been complicated, but, my intention--to simplify my life--was never meant to fail you. The goal was to lift up, to prepare, and, to strengthen the good things in my life while minimizing the negatives. The main hospital I was working with had some staffing issues which made it not only impractically, but, dangerous regarding my chemo and whatnot.  I would call when my platelet counts were around 8-9, as that is an indicator they will be getting dangerously low in the next 24 hours. During that time period, they can type and cross my blood type, identify and antibodies, irradite the blood, and, prep a room so i can head on in and get what I need with as little work as possible when the time comes.Right before getting me started, they check the bags, the bands, and make me take a combo of tyenol benedryl,

Next, snake fangs! When I got my port put in 2010 they were switching unbeknonwst to me, from on the company had been using for years to this new product, so, I went with Powerpoint since I did. It offered twice as many access points, which I needed specifically because procedures I would need to get done directly and as quickly and easily as possible. I can deal with  a lot of ambiguity and discomfort, with poor management, when people stop trusting each other, when they stop helping each other out, etc that is when I start to wonder, is this the ship. So far a few waves and some wind have hit us, but, nothing much. No Titanic action here baby!

As fate, or, God's sense of humor, would have eventually found its way into the mix, my transfusions got complicated fairly quickly. The inner port, the one closest to the sternum, seems to return significantly better. There are days where the inner port fouls up and I have to switch them up from time to time.

Once we got back the issue at hand, getting an actual transfusion, they were not a major hurry. So, as I am learning more about the ins and outs of various hospital teams, I started to see this one team as impetuous at the end of the spectrum and lethargic on the other. Their taking forever to get anything done was not a good sign. I would ask questions, and, the answers would underwhelm me. Nonetheless, I still see it as important to remain open. I went in at 8:55, and, we were in the ER by 9. So morning was okay thus far.  Now, the ER is a total gamble. You never know what you're walking into. In this case, it was a relatively quiet morning, but, that doesn't ensure I'll my window of time. Before counts get too low, which, for those keeping score, is about 6 or platelets and 9 for hematicrit.

We left the Baylor care, quite frankly, because there was a specific pair of people whose responsiveness had become non-existent. When I would call to arrange for a transfusion or medical care, I would not get calls back. Now, take into consideration, this is from a guy who, when I call, is already at dangerously low values already. Ignoring my phone calls for days on end is just putting people's lives at risk, literally. I cannot believe this is the kind of behavior we would see from professional nursing staff! Really. After we switched off Baylor to hospice, we still had issues, but, they were really more a matter of getting coordinated. A lot of what we were doing is a bit of shooting for a moving target. My counts are volatile, and, I still have issues I deal with on a daily basis. One day, it may be energy levels. Another, bleeding, and, yet still, on another day, pain may be the problem. There really isn't any one thing I find myself having to deal with all the time, and, it is that sort of inconsistency which grates on the nerves.

All I know is that things are more complicated than they used to be. Our hospice folks bend over backwards to help us and I have to keep that in mind, Ah, man, I feel that the date is coming. I used to be able to easily deny that my body was failing. But, it is harder and harder to pretend these days. My ankles kill me. Pain is throughout my body. Sleep is erratic at best. I have been trying to restore some sense of normalcy, and, yet, I can't seem to find it. I truly feel as if death is something I need to make my peace with. We have laid to rest many of the issues that we were unprepared for. Now, don't take this as my saying, "I am ready to die." I am not. I just feel like my body is starting to go there. And that is a weird thought. I simply stand here, unattached to the past, present or future, asking God, where is it you would have me go? If it is to life, on into the future. Fine. He'll have to work out the logistics. If it is to death, that too is up to him, but, in a different way.

I am not tidying up house, closing things down, etc, although leaving work was a bit like that. I am, however, finding my way to peace in spite of what the future holds. God, I am okay with whatever you decide. Lord, if you plan to take me, please make it quick. If you plan on keeping me around, God, give us a sign, and, let us move on with our lives. This interminable waiting. That is what I can't stand. It's like those TV shows where they tell the contestants, and, then, queue music for like 30 seconds.  Our tension has been palpable like that. God thank you for all you are doing in my life and the lives of all those I am with. I think it would be nice to see 36. I'm not gonna lie there God. Can you at least give me that long? Also, before we go off and start trying to figure out some crazy regimen for boosting counts, just give use the wisdom we need to make the right decision.

Tuesday, September 25, 2012

Explanation of my prayer list

A few days ago I enlisted the help of several people in a prayer campaign to help me fight some very specific battles that have been plaguing me of late. This evening, as I thought of adding some new items to the list, I realized, I should put up a blog post with the targeted items. If you are looking for the prayer list, please go here:
Prayer List
This way, when/if I made changes/additions, people can simply refer to the same post without having to worry about whether they got the email, if it had gotten sent to spam etc. Furthermore, it may be something others could stumble upon and assist in the process. Right now, I need prayer. We all need prayer. But, if I am to survive my medical condition, I literally need a miracle.

Due to the complexity of my condition, chemotherapy is no longer and option and all I can do it take transfusions and medications. It is a scientific fact that transfusions, over time, will begin to be rejected by the host body for a variety of reasons. At the moment, I am on a pattern where I get transfusions about once every 10 days. In fact, I get transfusions about once every 5 days, but, two different types of transfusions. So, I may do labs on a Monday, and, get a red blood cell transfusion on Tuesday for 2 pints of blood. We will call Monday day 1. I test again day 5, Friday, and, see I need a bag if platelets, so, on day 5 I get a second transfusion, this time, with platelets and platelets alone. I will be fine on red blood cells until about day 9, at which point I do labs, then, on day 10, get 2 bags of red blood cells. Usually, my platelets are dropping at this point, but, still fine. Four days later, around day 14, I do labs, and, it comes out I need platelets, so, on day 15 I get platelets. All this is to say, I have two cycles: days 1-10 (red) and days 5-15 (platelets). So, even though I have two "cycles" I am in this time period refreshing all cell types...just not at once.

This can continue for some time. My oncologist, who is also a hematology expert, pointed out that the body will eventually stop allowing this pattern. If it were as simple as me being able to do this indefinitely, I would not be "dying". However, there is a finite amount of time, the length of which no one knows, during which I can continue this pattern of periodic transfusions to survive. Yet, according to my doctors, this too will come to an end. When this occurs, I will die of one of two things: 1) bleeding out or 2) infection. Either is equally as valid, but, neither are something I am ready or willing to think about yet. Aware of the end results? Yes. Up for pondering them much? No. I guess you could say it's the denial stage, but, I have fought with enough stuff to just not feel compelled to dwell on things I cannot change in the long run. Eventually, I will die because of conditions similar to leukemia. Bone marrow transplants, from what I have been told, are really not an option because there is so much cancer in my bones. To clear out the cancer in my bones I would have to undergo such intense chemotherapy it would more than likely kill me in the process of trying to help me. So, we stand at a cross-roads. And, I see no "natural" solution to the problem. This is why I have come up with the prayer list shown below.

Much of what is written below is verbatim from my original email to folks who are praying for me in this violent prayer assault. I believe that supernatural healing CAN occur. Will it? I do not know. And, honestly, I have had entirely too many thoughts telling me "you can't trust God" lately to want to write much about it. Nonetheless, I return, again, in faith, holding fast to the fact that there are many realms. One is science and another is the divine. They can, and, in some places, do, overlap. Exactly, how, where, when, why. Shoot, I am not God, Jesus, the Holy Spirit or any of his angels. I am not a prophet or a saint to whom he has revealed the edges of these two spheres. As a side note, I think saying there are "edges" implies there are distinct, unique, and, separate shapes, wholly different in type and nature. Without getting into a big sidetrack, I would think the interrelationship between science and the divine is like that of brackish water and fresh: at what point does fresh water start and swamp water end? They are both water, but, no single line of demarcation can be drawn. There are infinitely subtle shades of differences, tiny changes, places where there may be more God than science, and, just a little over, a spot where God may pale in comparison to what can be known and knowable. In the very same way, were a person to float into space and try to determine what types of light exist where, lets say gamma rays versus light rays or ultraviolet, is virtually impossible. Are there true, real differences that could be made were one given such power? Yes. Absolutely. But, in the end, how much does ones ability to lay bare the precise, infinitely complex differences matter? I have gotten, in my life, to the point where I no longer feel compelled or driven to be the one who makes such articulate proclamations.

I am, however, at the point where I want to see God's power in action. Live. Real. Transfomation. Healing. Restorative. Eternal and beyond that which even our greatest imagination's fancy can reach. What I want is to be able to tell the world that God has done great things and not just say it, but, show it. Demonstrating, if, with nothing other than my own life, how incomparable God's greatest truly is stands at the top of my list of hopes and dreams. Shortly after being diagnosed, my verse became, "I shall not die but live and declare the works of God." Which works? Any. All. Every. Whatever He would give me the privilege to. It is with a mind focused on God in this way that I composed a list of prayers I sent to folks who are standing with me in prayer.  At times, the shape and specific items in my list with change. I see where some prayers will simply be answered, and, leaving it on the list, would be of no value in this personal metamorphosis from who I am to who God called and created me to be: a spiritual ecologist. This prayer list is my mission statement, my focused plan to move forward, death or no death. Having people stand with me to resist the enemy and the "rare" and "unknown" diseases that threaten to take my life is a joy I cannot share loudly enough. The enemy has come at me long enough and hard enough that he had to INVENT new warfare. I do not take this as a sign of pride. I wish I were not sick. I wish I were an ordinary person. But, by the virtue of my disease alone, it seems that the enemy is up to something and I need EVERY person who is willing to pray to keep me here on earth praying. As I get new prayer requests I will update the existing link to simplify the task for any who wish to follow along. Again, I still need to complete the last portion, but, I wanted to further clarify WHY I have this prayer list and what I hope to accomplish with it. May Jesus Christ be praised and glorified. May the power the raised him from the grave strengthen me and may God and God alone be able to receive praise and honor for the fact that I am still alive.

I should be dead. I overdosed while I was a teenager once. I have almost been killed by cars twice. I suffered complications and a surgery so severe that my survival was questionable. And, now, I stand, beyond the edge of medical care. There is no cure. Not for the first cancer. And, not for the second cancer. If I stop receiving transfusions I die. So, death is not just after me. It is out, in full force, to steal my life, rob my family and kill me. Period. Satan hates me and Jesus loves me. So far, Jesus is winning and pray that the gap widens! Please stand with me. If you have people who are prayer warriors, beg their assistance. I am nothing special. I am but a man. Yet, the amount, depth, length and kind of attack sent against me and my family for such a time as this makes me believe that God truly wants to do something great. It may not be through me, but, perhaps only through someone I come into contact with, or, something I say. But, it is about God and his greatness. Please stand with me that God's miracles would come to pass in order prove He is real. He is alive. And, He loves us. He the God who rules this world and without his love and power we are nothing. Be a part of a miracle and pray that God will do something to SHOUT TO THE EARTH and NATIONS about his goodness.

Prayer list

Good morning all. My apologies for taking so long to get back to everyone on this. Also, if you get two copies of this I am sorry for the duplicates. I think this was precisely what I was worried about happening: getting people ready to help, then, getting sidetracked. That being said, I am going to send the following email, even though it is incomplete, because I think praying for at least some of the things for which I need prayer--but not all--is better than no prayer whatsoever. So, below is some of the story explaining what this is about and the specific prayer requests. I am not going to let me perfectionism overrule my need for prayer and support.

Thank you for your willingness to stand with me and my family in these days. If you do not know my story I will give a very brief summary to catch you up to date so you can see where we stand and why we need your support. In early 2010 I was diangosed with a rare, incurable form of cancer called desmoplastic small round cell tumor. We just shorten it to DSRCT. I did 10 rounds of extreme chemotherapies before partaking in a radical surgery at the end of March 2011. After my surgery there were complications and I was able to return home to attempt further chemotherapy throughout the rest of 2011. In October 2011 I broke my right leg due to osteoperosis and chose not to go back on traditional therapy because of the extremity of the treatments. In April 2012 we discovered, that although the disease had been in remission, it returned. In June we learned it was growing throughout the body as well as a second, never-before-seen type of mutated cancer inside my marrow. As a result the doctors said I would be able to risk some chemotherapries which would more than likely kill me in the process of treating a disease that would not likely respond. I decided to foregoe the therapy and receive transfusions and medications instead so I could enjoy the rest of my days with my family and friends. 

Now, if science were the only thing we were to go by, this would be nearly the last sentances I could write. But, I and my family believe that, while science is powerful and has allowed me significant healing, there is greater power in God to be tapped into. When we received this diagnosis it was essentially a death sentance and since then I have vowed to view this as a lesson in learning how healing works. According to science, I am dying. But, I serve a God bigger than science whose ways are greater than our ways. Do I know I may still die? Yes, I am aware of it every moment of every day. Does that stop me from pressing into God for something more? No. Through your partnership and prayer with me, however, that may look, I am hoping God will restore me in a supernatural, miraculous way for which only God can be given credit. I pray that I am used mightly to demonstrate God's goodness and mercy to the world I encounter. May Jesus Christ be seen through, in and by me. I do not wish to be the focus of this, but, rather, that the great glory me may give would go to God the Father, his son Jesus Christ and the Holy Spirit. With this as my state and purpose I stand on a key verse, "I shall not die, but live to declare the works of God, in Jesus' name." That, my friends, has been my prayer since this began. And, it is to this day. May his great works be proclaimed! 

To try and overcome the dark spiritual forces that constantly attack me, we have prepared a targeted list of prayers that we pray daily. There is no requirement that you pray these daily. Sometimes we miss days becuase, well, life happens. But, we always return to them. This is not an exercise in religion where the number of times you pray get somehow added up and at a mysterious tipping point healing will occur. At least, that's not how God has me envisioning it. My vision is that God would raise the level of faith in all of our lives that the body of Christ would opperate in its fullness and, as outlined in Ephesians 4, "so that the body of Christ may be built up until we all reach unity in faith and in the knowledge of the Son of God and become mature, attaining to the whole measure of the fullness of Christ." Again, the development of all of us, to the glorification of God and Christ, is my goal. If I am not healed, but, we all are part of a stronger, more unified church, I would be satisfied God's work had been done. If I am healed, but, striffe, division, pride, and, jealousy rose up as a result, I would lament and beg God's forgiveness. For, this whole effort is for God. If I be healed along the way, praise be to Him.

With this being said, here are prayers we are targetting daily. As you feel led, please lift me, my wife, Kerri, and, our three kids, Page, Emma and Liam up, that we, as a family, may be drawn closer to God's blessed presence and holy name.

Below are prayers that we ask you stand with us uttering, declaring and beseeching God with. These may change as attack, mercy shifts. As we need to update it I will send out new emails accordingly.
  • Jesus, help me to fulfill your word to be a spiritual ecologist as you intended it.
  • God, let me write powerfully, creatively, and, transformatively with the prophetic, revelatory and life-giving power that will free souls from the slave trade (Revelation 18:11-17) until we are all moving rhythmically and easily with each other, efficient and graceful in response to God's son, fully mature adults, fully developed within and without, fully alive in Christ (Ephesians 4:14-16).
  • God in heaven, give me a FULL understanding, both conceptually and experientially, of what it means where John writes "the witness of Jesus is the spirit of prophecy." (Revelation 19:11) Make MY ENTIRE LIFE such a witness.
  • There are four writing works I desire with all of my heart to complete: 1) prophetic portraits of my children, 2) an autobiography, 3) a complete treatise of 100% truth of healing and 4) the fullness of my testimony in Christ.
  • Lord, pour out your mercies upon the Steeles that your grace may give them peace, joy and fruit of the spirit.
  • Lord, allow Will to complete the writing assignments you have placed in his heart and spirit.
  • Lord, give Will the grace to overcome the constant stress of dealing with regular life in the midst of what appears to be the process of dying.
  • Lord, release miraculous love into the lives of the Steele family.
  • Lord Jesus, create a supernatural environment of healing and hope in the home of the Steeles.
  • Lord, give them dreams, visions, words, wisdom, knowledge, and, insight into the various attacks the enemy may be aligning against them. And, more importantly, draw them into your safety and presence when such attacks come. Render these gorilla invasions of fear, distress, angry, frustrations, ignorance and confusion powerless against the Blood of your son Jesus Christ.
  • Lord, release financial providence into the lives of the Steeles that you, Lord, would be honored for your faithfulness and unfailing love.
  • Daily place the armor of the spirit upon each an every person in the Steele family that they may not be attacked or defeated by the weapons formed against them.
  • Lord, allow Will and Kerri to keep the divine order of significance. Let them keep what is important before their eyes and what is unimportant, may it fall where it may.
  • Remove any and all communication barriers between Will and family, friends, support staff, medical professionals and staff.
  • Allow supernatural forethought and vision into the plans which will most effectively glorify you God and stregthen the Steeles. Let them be sensitive to these calls and respond with full obedience to your move.
  • Lord, let Kerri have peace of mind, clarity of focus and freedom from physical, mental, emotional streess usch as 
  • Bring healing from the depths beyond this world to each person in the Steele family. Will's body, soul and spirit. Kerri's body, soul and spirit. And, the body, soul and spirit of Emma, Page and Liam.
  • Lord, you know that I (Will) has framed this entire disease process in the context of one great lesson in healing. God, I pray that you would allow me to live and proclaim you and your great works in the name of Jesus Christ.
  • Let this family use what talents and resources you provide them with to the fullest of their capacities. Allow them, Lord, to do amazing things with so little that you Lord would be praised and glorified.
  • Lord, please allow divine order to permeate the actions of this family. Let their communications be spirit to spirit, deep to deep.
  • God, if life is to be Will's fate, may it be a great testimony to the world that you God are real, that you are alive, that you do heal and that you do care about even the least of us.
  • Lord, release, in complete, perfect form, the messages you have Will to pass on to his wife, children, and, family.
  • Give a supernatural release of the love of Christ into the lives of all the Steeles. We wish to serve you Lord, glorify you through our choices, actions and deeds. Let our lives reflect yours in all things.
  • Lord, let me health be a reversal, a supernatural sign and wonder to the medical community, as I not only return to fullness of health, but, all the conditions from which I suffer.
  • God, you brought Jesus back from the dead, surely you can keep me from going there in the first place.
  • God, help me to honor you in ALL I do.
  • Jesus, I have never been around or through anything like this. Let me be a shining example of your grace, mercy and love in all things.
  • Lord, help me to be honest with myself and others in self-assessment of my condition. Let me be neither to over-confident nor too unsure, but, rather, finding the balance in all things.
  • Lord, let me my life be a work of art glorifying you to the fullest each and every day
  • Teach me, oh God, how to receive your blessings and grace.
  • If, Lord, I am to die, reveal my fate to me that I will be aware of the truth, and, not put my hope and trust in false things. To you be the honor, the glory, and praise for all things!
  • Protect, oh God, my wife, children, family and friends that their faith would be strengthened through this and not destroyed. I fear for my children they will have seeds of anger, hatred, and, rejection of you Lord if you take me away from them. If you do, Lord, please be their guide, their counsel and the shield.
  • God, help me and my family to reveal God's healing touch to the lives of thousands of people watching us to see what you will do God. Stand up and show that you God are the true god.
  • Jesus, give me the strength to rely on my body's natural defense mechanisms whenever possible. While I recognize the value and benefit of medications, Lord, I pray you would give me the courage, strength and supernatural relief from pain without relying on drugs. God, stop me from relying on the spirit of pharmakaea.
  • Lord, let me make the most of every moment I have. Whether it is to use my time wisely, to spend time with my children, to sleep when it is needed and be restored when the time is right.
  • Lord, help me right discern medical symptoms from "hiccups". If I have a problem, Lord, let me know.                                                                                                                                                                                                                                                                                                                                                                                                      
  • Lord, distinguish a difference between the spirit of medicinal help and the spirit of pharmakae. Protect me Lord from what is attack and give me peace to accept what is restorative and life-giving.
  • Jesus help me to only expend energy in productive ways, and, to not become frustrated, disappointed or distracted by doing the work of a "busy body".
  • God, grant me self-control, physical normalcy and peace of mind to maximize what time I have in the days ahead. Let manias and depressions neither push nor pull me off this course you have set.
  • Holy Spirit, quicken my mind, senses and will to make wise, life-sustaining choices with my diet, sleep and exercise patterns.
  • Lord, magnify and quicken my senses THAT your voice and will becomes 1) unmistakable 2) my responsiveness and submission is 100% complete without reservation and 3) you will would be accomplished regardless of my perfection (or imperfection). Let me pursue the fullness of your blessing and receive the grace of your forgiveness.
  • Let the creative works you have placed in my God work to such a degree that Jesus Christ is praised and I am TOTALLY forgotten. Praise be to God and Christ through the work set before us.
Added 10/11/12
  • Heal Kerri to the fullness of your capacity God. Remove her headaches, restore fullness of function and energy. And, protect her from the drain and theft stress has been in our lives. Protect her from the enemy's unrelenting attack and give her faith to replace doubt.
  • For Will, give him strength to transform his diet to avoid more medications and "diagnoses". Prevent diabetes (or prediabetes) and hypertension. Let peace and health radiate throughout his body.
  • Let Will find the strength he needs to complete his writing and "assignments". Prevent distraction and weight from pulling him in directions that take away from what  he needs to be doing.
  • Try not to let body's degradation prevent Will from praising God. Things seem to be "shutting down" and I hope to keep my head above water as this happens. Not a great prospect, so, I will need grace in this process.
  • Pray that the kids stay open and communicate as things change, i.e., Will's health declines and Kerri's stress load increases.
  • Find grace and God's provision as short term disability kicks in. We will be working with a lot less income and I don't know if I will be able to go back to work. Honestly, this answer will only come in time. I pray that Kerri and the kids will be able to do okay with my "limited" income. It is a scary prospect, one, I as a the sole provider for the family feel I am failing to provide. Hard to swallow this one as a man. God, please come through.
  • God's protection as we fall out of favor of the "best" doctors into the hands of lesser doctors who are fighting over the scraps. We need wisdom to know what are the best choices as we get passed from team to team.
Praise reports
  • Will, thank you God for allowing me to find a combination of medications that allow me to sleep. This had been a major issue and is now under control.
The following is taken from a book called the Prayer Passport to Crush Oppression by Dr. Daniel Olukoya. We stand on these prayers, not because there is special power in this man, but, because we feel anointing in his prayer gifting and believe his words are true, and, powerful tools of God to be used for freeing bodies, souls and spirits from oppression. This part is important, but, the items listed above are more important at this time.

Dismantaling Cancer

Confesions: Proverbs 4:20-22: My son, attend to my words: incline thine ear unto my saying. Let them not depart from thine eyes; keep them in the midst of thine heart. For they are life unto those that find them, and, health to all their flesh.

2 Tim. 1:7: For God hath not given us a spirit of fear: but of power, and of a sound mind.

2 Tim. 3:3: But the Lord is faithful, who shall stablish you, and keep you from evil.

Matthew 15:13: But he answered and said, Every plant, which my heavenly Father hath not planted, shall be rooted up.

Mark 11:23: For verily I say unto you, That whosoever shall say unto this mountain, Be thou removed, and be though cast into the sea; and hall not doubt in his heart, but shall believe that those things he saith shall come to pass: he shall have whatsoever he saith.

Mark 11:24: Therefore I say unto you, What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them.

Jeremiah 30:15-17: Why criest though for thine afflication? Thy sorrow is incurable for the multitude of thine iniquity: because thy sins were increased, I have done these thing unto thee. Therefore all they that devoir thee shall be devoured and all thine adversaries, every one of them, shall go into captivity; and they that spoil thee shall be a spoil, and all that prey upon thee will I give for a prey. For I ill restore health unto three, and I will heal thee of they wounds, saith the LORD; because they called thee an Outcast, saying, This is Zion, whom no man seeketh after.
Praise/worship: pray them interceding on my behalf. Change the words as needed to reflect the prayer to be as if it were my own.
1) All the activities of silent killers in my body, die, in the name of Jesus.
2) You the symptoms of cancer in any area of my body, die, in the name of Jesus.
3) Every evil growth
As noted earlier, I just couldn't sit on this any longer. Please forgive the length. I am in all out assault mode. But, please remember, for all that I ask, keep GOD at the center of this. Not Will Steele. Jesus is Lord. I am his servant. The Holy Spirit is worthy of honor and praise. Not me. I am just asking that God would spare my life that I could begin to do the REAL work he has set aside for this day. For without our Lord and savior Jesus Christ, all of these words, all of these prayers, all of these actions are meaningless. Stand with me to keep the foundation centered on God.

Thank you for standing with me. I ask the Lord to cover, protect and hide you from the roving eyes of the enemy. Your brother in Christ,