A Scare

A Scare. It’s when something starts happening beyond your control. It’s when events starts rolling one into another and then start spinning and spinning, like a snowball down a hill, a ball of yarn in reverse. You look up in the distance and where you expect clarity you see insecurity, where you hope for an out you see confusion, where you want a solution you see only how things can get worse. And then you get scared. Fear is the natural result, fear is good, fear keeps you on your toes, it keeps you engaged with the matter at hand, and if used right it’ll stop you from just running away from the situation.
We had a scare.
It was a nice warm day outside Friday, I went out to enjoy the sun with my parents and sister. On the way out I tripped and the cable pushing on my stomach pouch pulled. A little while after that I noticed blood coming out of the tube from my stomach, the cable connecting the stomach cable with the repository bag detached and I found myself outside with a detached tube coming out of my stomach and blood clots coming out of the tube. We headed quickly back in, but it wasn’t clear the bleeding was stopping at all. It seemed to keep on going . Sometimes it would slow down a bit, sometimes it looked like it was over. Then it would start again - just red blood streaks coming out. A scare. A fear, a mini terror.
We made it back to my bed and called in the nurses. They where doing a great job at assessing, calming, helping out. They reconnected the cable and the bag and consulted doctors over the phone who said to keep on monitoring it throughout the night; I was put on bed rest and told to just keep on monitoring it over the night. Over night there were some more streaks, but all subsequent nurse shifts agreed that it is winding down, and maybe not a concern at all. One nurse pointed out that I am on high dose of anti-coagulants, so bleeding streaks are reasonable at these high doses.
Eventually everything calmed down. The bleeding stopped, the doctors agreed it was just a small clot left over from the surgery, and there didn't seem to be any more reason for concern. I resumed what life looks like resumed for me right now, which is much and not much. A routine almost, but not a great one.
I am spending most my time in bed, mostly because I don't have the energy to do much more. I am getting pain medications on a regular basis every 4 hours. I can ask every hour or so for pain medication breakthroughs - an earlier lower dose of pain medications. It becomes a choice every couple of hours or so - do I ask for an earlier dose of medication or wait till my regular higher dose. The doctors and nurses encourage me to just take what I feel I need, but I'm not always sure what it is that I need, what it is that I can stand. Can I take more pain? probably, but is it worth it?  more pain medication means I will be more drowsy, it means that it is more likely the doctors will increase the regular pain dose which will leave me with less room for future increases in doses, but is that really a bad thing?
Right now there is little clarity on what will happen next. Typically a patient in my  situation just gets weaker and weaker and more and more in pain. This usually ends up in an increase of their usage of pain medications, which makes them more drowsy, more sleepy, and hence less aware of their surroundings. They then spend more time in bed as the disease progresses.
I decided to try to fill out those hours where I am up and aware with some kind of activity, some kind of project to work on. When my wife and children come to visit, I try as much as possible to get out of bed and spend the short visitation time with them. I spend as much time as I can with my parents, I play music,  I started updating our family tree project online, I teach our kids how to solve the Rubick's cube, I am clearing some online file folders - basically projects to keep me engaged with life. At the same time I have to ask myself if those projects are just a way of avoiding dealing with the reality of life - or death in my case. Am I doing the best for my family by fighting? after all, uncertainty is hurting them as well, they can't make plans for the rest of the summer because no one knows how much time I have left.
We don't know what time will bring. The nurses are trained to identify a state of 'hours to immediate days', at which point my family will be called in. That could be the end of all of my projects, and that would be the real ultimate scare.