Marshall's music, t-cells, t-shirts and more

Tuesday, November 1, 2016

Coding

Breathe. Sometimes I have to remind myself to breathe. Some time during the third week of October I realized just how hard this month is going to be. And now it's November. The month I've been dreading most this year is here. Often I think about what was going on exactly one year ago today as it was Marshall's last month. It was also definitely his most painful month. Last week I opened up the sublime program I use to code for the first time in about a year and so many memories came rushing back. It was so hard for me to watch him suffering (WAY harder for him to suffer) so much and often I would turn to my computer and code while sitting in his hospital room. More medication. (Code a new step for tabs). More medication. (Code a new step for reading a bar code). More medication. The morphine pump wasn't enough. (Code a new step to retain the contents of a bottle). We are upping the fentanyl patch again. Now we are trying a new drug, methadone because we have run out of options. His body was becoming more resistant after four years of so much pain medication. I couldn't tell him, but I cried every time I left the room to breathe. Coding on a computer was a distraction from watching his pain. A way to sit in the same room with him and try not to let him see my worry and tears for him.

Then he coded. Not the kind of coding I was doing, but the true, blue, hospital, life-threatening kind. He was taken to the ICU in his second round of septic shock (the first one was last year). I stopped coding and remained right by his side ever cheering that he could get through this again. He bounced back relatively quickly from that episode. The doctors knew what infections caused it and were fighting them with antibiotics. Then five days after our sixth anniversary, came his third and final code. Again, septic shock. There was something different this time. As they pumped him full of fluids to try to get his pressures stabilized, this time they handed me his wedding ring. "We don't want to have to cut it off later" they said. Wait.a.minute. They had pumped him full of fluids to try to stabilize his pressures twice before. They had never handed me his ring. I could feel a sense of urgency to tell him all I wanted to say. To tell him that if his pain was SO much to bear, that he could let go. To LIE to him and tell him Kez and I would be ok if his fight was over. As soon as I said it, I turned from him and yelled a silent and internal scream. I had felt the urgency to say those words to him before, but I wouldn't. This time it was different. It was like someone was punching me in the gut, forcing the words out.

This month brings with it several anniversaries. It would have been our seventh wedding anniversary, but instead it is the first anniversary of his death five days later. A friend of mine asked, "what do you want to do on that day? Do you want to stay home and cry or do you want to distract yourself and get out?" I.don't.know. I just want to be numb, just like Marshall's song numb. I wish I couldn't feel all this and that I couldn't remember any of this. I bet Marshall felt that way physically this month last year, as I am emotionally. On that 17th day of November, Marshall couldn't breathe. We had discussed end of life decisions several times before. He had told me his greatest fears were losing his mind and not being able to talk or sing. And here he was facing the decision to either lose brain cells by not being ventilated or lose his ability to talk and sing by being ventilated. It was the bravest decision I've ever seen any man make in my life. It also ended up being his last decision. There were more decisions that came after that. I'm sure I will blog more about those later this month. It will be a difficult month for me (already has), so this blogging/ journal will be good for me my grief group leader said. I didn't realize how many times he sang about breath and breathing in the lyrics of the music he wrote until he struggled so much for his own breath. "You left me Breathless and waiting...I could not believe my eyes...oh as you were walking by" were the lyrics he was singing that first November 13th that I walked by him.
One of the first days

One of the last days

No comments:

Post a Comment