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 but...at 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 letsrun.com. 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 letsrun.com, 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 computers...at 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.