Being in the hospital is stressful in so many ways, but one of them is trying to be your own advocate. Take this seemingly small issue: Ever since I got my Hickman catheter inserted in June, I've been instructed to flush the line or lines with heparin immediately (meaning, within about 10 minutes) after using it for something else (like chemo or blood draws). The heparin prevents the lines from clogging up. If they clog up, I'm screwed. I'd have to have this catheter removed and a new one put in, which would be a major ordeal. So I'm really vigilant about taking care of it at home, and I've been having to speak up for myself here because some nurses tell me it's not hospital policy to do that. (One nurse told me there's a shortage of heparin, so they're being encouraged to use saline locks if they plan to use the line again in a couple of hours.) Nonetheless, I want my heparin, and I want it now! I don't know how many times I've had to assert myself on this. And I always feel like I'm coming across as the "difficult patient."
So one of the nurses - a very nice guy, but we had the heparin discussion tonight - started talking to me tonight in what started to sound increasingly like a lecture about how we can't control the little things, and how sometimes we just need to let go and be calm. He said some other stuff, but by that time, my head was simmering, and I asked him to give some time alone (which is actually how I do deal with my stress). Of course there are many little things I can't control, and I don't try to. I don't complain when they wake me up every four hours to take my vitals. I try not to complain about the every-six-hour needle pokes for blood draws. I tried to be patient Tuesday when I waited for the better part of the day for them to tell me when they were going to drain my lungs. This chest tube has hurt so badly, but I've been trying to be a nice, patient patient and to thank people for the things they do for me, etc.
I need to be able to take charge of certain small things that affect my care - but I'm well aware that I am "not very healthy right now" (as the nurse put it), and that the biggest things are things absolutely outside my control. Like the results of tonight's PET and CT scans, which I should hear tomorrow. I am dreading them with all my heart, ever since Dr. S. told me this morning (woke me up standing at the edge of the bed - freaky!) that he thinks there will be more tumor growth where the fluid was. If that turns out to be the case, I don't know how I'm going to bear the news. So far, I feel like I've been managing not to sink into a mire of hopelessness. If I find out I now have a new slew of ugly tumors growing inside my lungs - if things are taking off faster and faster, what then? It overrreaches my tenuous hold on coping with cancer. It makes it harder for me to trust in my body or to believe that my body will carry me through more and more time.
This week has thrown me and my spirits in ways I never imagined when I checked in Monday. Of course I have to take care of my damned catheter. I can't let go of everything. That would be giving up completely.