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.

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