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 are...at 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 this...my 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.
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 are...at 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 this...my 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.
I read this daily and wish we could converse about it. You're an inspiration, Will, and I keep you in my prayers.
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