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.
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.
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